Help me help you help her help him…

The art of circuitous language is -sometimes- the only way to get the point across.  In my years as the parent of a Special Needs child, I have learned that getting to the point is often met with “NO.”  That I often am at the NO end of the conversation is beside the point.  The word COOKIE will get a NO; a whole sentence with ASL and interpretive dance included is more likely to get a YES.  A direct request from the Speech Therapist to the Director of Special Education regarding J’s use of his iPad as an assistive device got a NO.  I just fired off an e-mail so circuitous that I am hoping it will wear this woman down to a YES…cross your fingers, will you?

The gist of the situation is as follows: J has Speech Therapy twice a week and I had spoken to the therapist regarding using Proloquo2Go (which we will purchase and install in J’s iPad) in the context of these therapy sessions to augment his communication skills.  The school has iPads but they don’t have these apps because they have yet to figure out how to purchase them to use as educational tools…or some such malarkey.  The therapist and I agreed that, while J has improved his skills thanks to her efforts, an assistive device would go a long way to helping him.  She had warned me, though, that the district tends to only allow the use of iPads “under special circumstances and on a case-by-case basis.”  How J warranted a NO when another kid got a YES a few weeks back is beyond me; J cannot get any more non-verbal.  Well…let me reverse: J COULD get more non-verbal, but that’s what we’re trying to prevent.

In the face of NO, I simply told the very apologetic Speech Therapist that YES is awesome, but NO can be more fun, and I intended to get a YES after such a curt denial.

I spent a couple of hours this morning composing my appeal.  I clicked SEND on the e-mail less than an hour ago.  It’s lunchtime.  I’m sure it will take the administrator (or Dr. No, as I now call her) a while to work her way through my 1200 words.  I am sure she will have to debate with herself whether the acid reflux she’s experiencing is due to something she ate or something she read.  I am sure she will say it’s not a viable option and will trot out the IEP as a reason for not saying YES.  I will then, probably, stomp my feet in front of my computer and fume while I, in anticipation of yet another IEP powwow, quote Dave Barry: If you had to identify, in one word, the reason why the human race has not achieved, and never will achieve, its full potential, that word would be ‘meetings.’

My argument, I think, was sound in comparison to the one quoted to me.  According to the Speech Therapist, who cannot tell a lie because she knows I will go with this to the mattresses, the assistive technology in question doesn’t do anything for J.  That the risk of him using the internet is even being batted around is beyond me; J wouldn’t know how to navigate the ether if you sat him in front of a computer and told him “here’s my credit card, go have fun!”  J firmly believes that the computer at home is a TV set that I have control over, and that’s that…  So…the Wi-Fi argument is moot.

The general idea was that using an assistive tool would detract from Speech Therapy.  I explained (quite loquaciously) that this was far from true.  While, yes, the assistive technology will provide a voice for J, it will also allow him to speak more completely.  Instead of resorting to just one word (because forming the others is too laborious for him,) J will be able to select several words and have them spoken out by the iPad.  As I explained, this will take a lot of the guessing out of “what’s wrong?” and an AAAAAAAAAARGGGGGGGGGGGGGGGGHSQUEEEEEEEEEEEALLLLGRUUUUNTROAR in response.  The distance between appendicitis and peritonitis might be shorter if one doesn’t get J to say more of what he’s feeling.

I explained, and please let me know if you think I’m wrong, that I cannot go around changing all of society to display a greater willingness to wait for J to talk and get his point across.  While, yes, there are plenty of patient people out there, standing in line behind a person who cannot make him/herself understood will test anyone’s patience, especially if they are in a hurry.  This is not frivolity on our part, this is the next step after PECS and a wood panel covered with Velcro.  This is an opportunity for J to possibly say to us things he’s never been able to say…  Personally, I am looking forward to the first time he says YOU DON’T LISTEN!  YOU PEOPLE ARE SO ANNOYING!  I am living for that moment right now…even though I may regret this sentiment later.

The one thing that I tried to convey to Dr. No (and I don’t even think she’s a doctor, but the name just fits…) was that J doesn’t just exist in the realm of school.  J’s life extends beyond that, and will continue to extend after he no longer is of an age to participate in the public school system.  On the day J turns 22, his school days are over…so we are sort of pressed for time to make up for all that was not tackled properly in the earlier years.  We have to make up for the time lost using Rosetta Stone (thank you, Mr. Teacher of the Year) and minimal ASL; for the belated introduction of PECS (thank you, school district that was didn’t listen when we said we’d do ANYTHING  to help) and the lack of research on ABA until AFTER J had started melting down in frustration.  When the school system no longer is there to serve as our backup, we will be on our own, and we want to help the people who work with J NOW to use the time to his advantage and within reason.

I am not, like I’ve seen some parents do, demanding that the school district provide these things for J.  It is OUR job to provide the iPad, the apps, the advocacy to implement them as an assistive tool in school.  What I am asking is for a little more vision, over the kid’s shoulder as he’s looking ahead, not as we are facing him because then WE are looking BACK.  If this whole thing is successfully implemented, J could be on the brink of coming into his own, expressing more of who he is, what he wants, what he needs…

I know it sounds like we are being lazy.  I know that’s probably what some administrators think parents are aiming for when they want to implement something new; it will -oh, God, YES!- make our lives easier if we can hear what J wants instead of playing charades for an hour and watching his frustration grow like a sebaceous cyst until it explodes.  Of course I want to be able to not go the long way around when I need to know something J can tell me, but it’s not laziness…

It’s an aching need.  It’s a need to know that in there, somewhere, lurks the wit that I see when I look in my son’s eyes.  It’s an urge to be told off when he’s angry instead of watching him pound his head with his fist.  It’s the desire to be asked for something politely, something that he doesn’t yet know the word for, something that he points out now until I figure it out and, exhausted and depleted, we reach either an impasse or some sort of satisfaction…

To get to the point, yes, I had to go through the verbal hemorrhage route…I’m hoping it’s worth it…

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6 thoughts on “Help me help you help her help him…

  1. We are in the process of getting an iPad with a communication app for my four-year-old. The speech therapist at his preschool actually instigated the process. She likes to say that getting an augmentative device is not a sign that she thinks my son will never talk. Instead, she knows that it has the potential to reduce his level of frustration. Plus, it will be modeling spoken language, too. She knows of other children, not necessarily with autism, who showed an increase in verbal language thanks to these devices.
    We had hoped to get a dedicated device rather than an iPad because even the vendor reported behavior issues related to using iPads (i.e. kids used to playing games on tablets and now being told they are a tool for speaking). However, our son has no experience with a tablet, so he won’t have these expectations. And, while our situations are different, it sounds like you are saying that J won’t have this problem either.
    I hope “Dr. No” comes to her senses.

    • That is AWESOME! Have you reviewed the apps available? We opted for Proloquo2Go, but there are two others that come highly recommended: TapSpeak and the newer Tobii SonoFlex. Our ST actually spoke to someone from assistive technology at the college to get some input on this, and based on that we went with the Proloquo2Go. We are thinking J will mostly use it for the assistive technology and his iTunes, but that’s part of his voice right there…once he chooses a song, he’s trying to tell you something. I have NEVER seen him even remotely attempt to play a video game; he will watch TGG when he’s playing, but he won’t take the time to sit and play himself.

      Let me know what you decide. This is such an exciting time…so many things are available now that weren’t available when J was younger and could have made so much progress with a little more assistive technology!!!

      I hope Dr. No relents…I don’t want to have to stand on a soap box with a bullhorn in front of anyone’s office, but I WOULD! 🙂

      • We will be getting the LAMP Words for Life app. The original plan had been to get an augmentative device but we haven’t figured out how to pay for that. For now, we going with the iPad/app.

      • I had to scrounge and save for the iPad and the app. I can’t even imagine what I’d do if we wanted to go more high-tech than that. I installed the Proloquo2Go today and it’s quite impressive…I’m hoping that J likes it and is willing to slowly get used to it. I think he will, but…you know our kids! You never know what’s going to happen!!!!

      • I really need to start “liking” people’s blogs…I read things, but then I dash off to do something else and completely blow off clicking on the thing… I swear to you that some days it feels like I don’t stop, and as soon as I sit down I think to myself “but I have THIS I need to get done!” I know it’s probably the same for you, only you don’t act like a hamster on a combo of speed and helium…which I do… :/

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