… from the bungalow

iSuck: A technology in parenting FAIL

17 Comments

If you missed it, my son Finn has no functional use of spoken language. He can say “yeah,” “bahyaya” (banana), “baba” (Papa), and a couple of other sounds if he concentrates really, really hard. And truly, his “b” is more like a hard “v” sound. But for the most part he’s used signs and grunts to communicate his wants and needs. (Yes, his hearing is fine, and he understands speech. It’s an oral motor problem.)

iPod sync

Last summer, his mom and I decided to purchase for him an iPod Touch and an AAC app called ProLoQuo2Go. This app costs $189.99 in the iTunes Store, but is significantly more affordable than an actual AAC device. He’s learning to use it within certain contexts, but it’s clumsy and limited in its use in daily, natural communication.

Anyway, we were encouraging him to use it more at home and explore the menus independently, etc. Well, Finn has the mental age of about a three-year-old kid, and he likes to push buttons (tap icons). And left to his own devices for about half an hour, he managed to somehow reset his iPod. Or something. I didn’t see it until later, but apparently this $200 (after tax) software was gone. The password protect feature was also activated.

I finally figured that perhaps I had set a pass code just in case I didn’t want him messing with it at certain times. So I punched it in, and voila: it was unlocked. Unfortunately, the damage had been done. The iPod needed to be synced and the app was gone. Even more unfortunate was the fact that shortly after I purchased the app last summer, my computer contracted a virus (*whore*) and I ended up wiping it clean.

So last night I try logging in to iTunes to see if I can download it again. Forgot my password. Reset password. Log in. Click to buy app. Enter password again. “Are you sure you want to buy and download ‘ProLoQuo2Go?'” Not really… Click “Buy” button anyway. “We could not complete your iTunes Store request. There is not enough memory available.” Hmm? Install updates to iTunes. Restart computer. Try again. “We could not complete your iTunes Store request…” Run disk clean-up utility. Try again. “We could not…” OK.

iTunes error dialog box

After tinkering around for an hour or so and having nothing to show for myself, I decided to give up for the night. I used the “Report a problem” link to see if I can somehow get this app back since $200 is a bit much to stomach on my income. There are other, less expensive apps, but I can’t download those, either. (Maybe it’s a firewall issue…?)

What really sucks is that this software is written into Finn’s IEP, so now he can’t actually work on his goals with his SLP at school. Maybe they can download it there. It seems like they’d want to have it anyway. Dunno.

This is really central to my hesitation with using an AAC device. They’re not very practical, and shit happens. Software malfunctions or gets deleted altogether. Hardware breaks… You know, it kills me that so many parents take for granted the fact that their kid just magically learns to talk. They’ll never have to deal with hardware and software and countless hours of speech therapy and communication training, not to mention the heartache and frustration that goes along with it.

But, I sing bedtime songs with Finn every night, and he’s starting to vocalize more and more. None of it is speech, but it’s something. Now age 7, he’ll probably never develop any kind of recognizable speech, but I can keep working with him. And I can’t tell you how much joy it brings me just to hear him vocalize in his seemingly tone-deaf voice (I don’t think he’s actually tone deaf, he just doesn’t have precise control over his vocal chords) while I sing bedtime songs with him. I’m just tired of trying to teach him how to use crap to do things for him, only to have it break down. But I suppose I can’t be there to translate for him his entire life. He’ll need to develop some independence. I just don’t know what the answer is.

What I do know is that Apple can suck it. An egg. Apple can go suck an egg.

Frustration from the bungalow,

Chris

P.S. On the plus side, things could be much more difficult for Finn. I know of parents who’ve had to fight with insurance companies literally for years to get necessary equipment like motorized wheelchairs for their kids. Also, I was able to re-download the app at work. Now if only I had thought to bring his iPod with me… Curses! Oh, hey! Be sure to “Like” From the Bungalow on Facebook! šŸ™‚

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Author: Chris

A dad with a self-evaluation complex. Also a music therapist, college enrollment administrator, and hippie-nerd.

17 thoughts on “iSuck: A technology in parenting FAIL

  1. That sucks. We lost a lot of personal photos when my wife’s iPhone had to be reset recently. Now I try to sync up all of our devices on a weekly basis, just to try and cover our tracks. It’s a lot to keep up with, and like you said, stuff happens. At least you got the app back. Does the password protect thing keep apps from being deleted?

    • Yes, I’ll be backing up his iPod on a weekly basis from now on. I don’t know about the deleting apps part. I haven’t used the thing much. It seems like every time I try to do anything with it other than help Finn with his communication app, the darn thing gives me error messages left and right. There’s probably a way to lock access to things like that, which is probably why I set a pass code in the first place. Whatever it was, we’ll recover.

  2. Christopher, just want you to know how I internalize all your frustration. I always have since we began experiencing Finn’s limitations. John and I so wish we could help more. So glad you got the app back. Hope Finn can try it again. Hope you get some sleep tonight. Please let us know if there is anything we can do or help with. Finally, you are an excellent father to Finn. No one could ask for more.

  3. 1) ARGH. I agree with your final assessment about Apple. I’m glad this particular set of glitches was remediable.

    2) I didn’t even realize some of the things I’m taking for granted till I read this post. Thank you for opening my eyes.

    • 1) Yep. Thanks, Deborah. We’ll have to reprogram all the custom stuff, but that’s not the end of the world. I just hope his SLP at school forgives me. šŸ˜›

      2) Thank *you* for being open to new perspectives. It’s what makes this world great.

  4. Been there, done that.
    Battled with Medicaid, Child Support Enforcement, Health Insurance (just to cover therapy…ugh).
    Luckily CJ has fantastic speech (sometimes a very robot-esque voice), but on occasion he has had issues. Expressing his feelings is difficult sometimes because he just doesn’t know HOW he feels (I guess that’s another issue all together.)

    So anyway… We’re looking in to DragonSpeak (I think it is?) for him when he’s starting to write term papers. His issue is fine motor writing… he’s thinking so much faster than he can write, and his handwriting is just awful – but getting better. CJ’s almost 12, so we’re (and yes, I mean “we”) starting 7th grade in the fall, hopefully things go well.

    Anxiety is high, and we’re trying to deal with that by knocking off a few extra curriculars. Clarinet is taking a back seat right now. He’s getting a lot of “headaches” at practice time.

    Anyway… I take for granted sometimes that my son does have it more easily than others with Autism Spectrum Disorders… Our life is hard enough, I can’t imagine how hard yours must be.
    Kudos to you…

    APRIL IS AUTISM AWARENESS MONTH!
    Every day is Autism Awareness in our house.

    • Thanks for sharing your experiences with CJ, Emma. Working with Finn does pose challenges, but like I say, I feel fortunate that things aren’t worse. And it has taught me a lot, for which I’m grateful.

      Now, about the clarinet lessons… As a music therapist, I will encourage you not to give up on music lessons. Clarinet might not be his thing, and it’s just a matter of figuring out what is. I happen to be a clarinet player and have tutored clarinet students on the spectrum, so if you have questions about technique and the like, don’t be shy. See if you can find a music therapist in your area. Many offer adaptive music lessons for kids with special needs. I’d expect to pay about $25-30 per half-hour lesson since there are other considerations to be made when planning adaptive music lessons.

      Learning to read music and play an instrument, especially one like clarinet that requires fine motor skills and breath control can induce a lot of anxiety for kids with ADHD or Asperger’s. Have you tried something more kinesthetic like drums or piano? Those types of instruments provide more tactile feedback and can be more rewarding for kids with sensory issues.

      Thanks for reading and for commenting!

      • Chris,
        I didn’t know that about you! How cool!
        CJ has a brilliant ear for music – he was 18 months old when he said, “Mama, that sad song.” it was a classical piece in D minor…
        He was playing trumpet for a while, the pressure on his lips was just too much – he is so good at clarinet, I think that right now it’s just too much to handle. He’s also in to tae kwon do – a blue belt, rock on kiddo!
        CJ is playing piano at school, and plays by ear. He can read music and has an amazing singing voice… Music and reading are his releases – right now his stimms are popping his joints – and man it hurts to hear!!!
        I would totally love to chat with you, it’s nice chatting about our kids with other people, sharing ideas and strategies, as well as just relaxing with others that “get” it…
        talk soon!!

        • Glad to hear he’s still involved in music. šŸ™‚ I agree, it’s good to chat with other special needs parents. Can I say Sparents? Has that been coined already? If not, can I claim it?

          • ok, are you me?
            both of us had hell in junior high (well that’s normal tho), both of us were saved by marching band, and now we both have kids with autism…
            **wavy fingers** wooooo-ooooooo….
            šŸ˜›

  5. Chris,
    First, thanks for sharing. I can only imagine the challenges you’ve faced and continue to face with Finn’s care.
    A few things struck me while reading… Oh, how we all have our “crosses to bear”, challenges we face each and everyday. It’s interesting how we can live our separate lives never thinking of the challenges and hurts of another person. Sure their kid has special needs, but we remain padded with ignorance in our own world until someone opens up and shares about their life. And even then, connection requires us to make time and show them they are important and we want to know their story. All that to say, I had no idea of all the specific challenges you face with Finn. At the same time, I can relate to some of what you’re dealing with emotionally by simply having a special needs son.
    If Finn’s lack of speach is a motor issue, would sign language be an option? I taught all of my boys some signs when they were younger and even now, they still enjoy learning new signs. Just a thought…
    Again, thanks for sharing with us. Take care of yourself. Karon

    • Thanks, Karon. You’re so right. It’s so easy to separate ourselves from the struggles of others. It really takes someone special to take the time to not only recognize that people have their individual challenges, but to really hear them and understand.

      Yes, we’ve been using sign language with Finn since he was a toddler. Unfortunately, there are downsides to that. First, Finn lacks motor skills, so his signs come with a sort of dialect that even people who know sign language have a hard time understanding. Second, most people don’t use it, so it’s not practical for him out in the world. I prefer it because he’s trainable and it doesn’t require any special equipment. And after all this, I’m feeling even more moved to keep on the sign language. If he really gets that down someday, we can try to get a translator to go around with him. He’s also moderately cognitively impaired, so constructing sentences has been tricky. He generally just uses one or two signs to convey what he wants. Can you imagine how incredibly frustrating it must be to have to communicate everything by grunting and whining and yelling? Life can be rough, man.

  6. šŸ˜¦ Aww. Poor Finn… iPhail indeed. D:

    • For real. The good news is after many, many emails, I did get my money back for the app. I was going to write a follow-up post about it, but it just seems untimely now. šŸ˜›

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