Tag Archives: speech

Huh? What?

11 Oct

Sandy over at AspieTeacher.com (an amazing blog by an amazing woman…If you are, know, or teach an Aspie then it is an incredible resource… If you just want to know more about life with Asperger’s, then what are you waiting for? Head on over!

She wrote a great piece (and I apologize for only getting to it now) on Auditory Processing Disorder that expresses her experience with APD and Asperger’s.

I don’t talk about my experiences with Asperger’s that often, at least here.  Perhaps I should start doing so, as it has come to light that I have been harshly criticized by people who should know better, but for some reason, don’t.  Perhaps I need to stop giving people the benefit of the doubt, as the favor is rarely returned even when it is an extremely reasonable accommodation, causing little to no discomfort or inconvenience to the party on the other side of the communique. .

I do talk quite a bit about raising a child with Asperger’s, as I find some of my issues are challenging to explain, and sometimes I feel like a freak (and not in a jovial “hey, I’m embracing my freakdom” sort of way)… That is until I find that there are plenty of bloggers out there (and non-web based authors) who do talk about it and I realize that I’m not alone, and I’m not just some weirdo who (in the case of CAPD) can’t properly communicate with the ease of sending words and receiving them verbally and aurally.   I need time and space and often paper or my keyboard or a dark, quiet room to digest what I have heard and piece together an appropriate reply.  I need visuals to understand auditory input.  I produce visuals to respond (I type really fast and thankfully while my grip is weak and I can barely pincer-grasp/hold these days, my typing has not been impacted, though I can’t do it when the rest of me is *that* exhausted, I still can do it when I’m heading to that point, when my voice fails me). I watch TV with closed captioning on and the volume up so I can hear clearly (as long as there is no other sound in the house.  Even someone talking in the other room means I cannot focus my hearing on the TV’s sound as everything comes in at the same volume, it’s like sounds competing with each other.  It’s exhausting.  To do anything that doesn’t involve sound as an integral part of the activity, I wear earplugs or sound dampening headphones.  Simply being in the next room while baldguy helps Alex with his homework can be information overload for me, even though I am not participating, it’s like my brain just keeps absorbing and things get mashed up and jumbled and it exhausts me.  Daily sounds are a constant assault and basic things like the dishwasher and the dryer, even the coffee maker and the air conditioner, have me putting up my defenses the moment their sounds are audible.  My defense mechanism seems to be sleep.  Thursdays I can’t even begin to wake up until after 11am, as the landscapers are electrically pruning and mowing the communal areas of our development and *yawn*

With a small and now a not-so-small child around, it was hard to just pop in a pair of earplugs, and I often just gave up on doing anything that wasn’t Alex’s immediate activity-focused.  As most parents of children on the spectrum know, we rely so heavily on our senses to track our children.  We still have baby locks on doors in our home, not because Mr. Smartypants can’t figure them out, but because they do make some sound when a breach is attempted, and that sound can be just enough warning to jump into action.  Thankfully, Alex is not a runner (or a climber). Unfortunately, we usually don’t realize he is getting sick with a fever or ear infection until he starts climbing and totally loses his sense of danger (when he’s well he is the safety captain of our home), so we rely on little auditory and visual clues and a few extra seconds have, in the past, meant avoiding injury or worse.

Baldguy’s two year stint at home has meant that the time when I was once able to control the flux of sound in my environment, when Alex was at school for a couple of hours in the morning, disappeared instantly.   Here we are, more than two years since Jeff lost his job, and I still am distracted by the sound of his chair squeaking or the laundry being run during daylight.   Telephones have been off limits as I cannot focus enough to even process the bare minimum if there is extraneous sound, and I’m on edge at the potential of a distracting sound to the point where I can’t even make a word budge out of my mouth.  It’s frustrating.  It was isolating, but thankfully family and friends are on Facebook for the most part, so I am able to connect in a way that allows me the accommodations  I need, and blogging has also given me a place to put the words that I cannot speak.  The blogged stuff isn’t so much about what I can’t verbally express but it gives me a place to hopefully start a new conversation, albeit one that happens “virtually” and with the typed word.  Writing things down has been a trend since I started being aware of the changes in my auditory processing.  Oddly,  CAPD hasn’t been something I have had since birth, but rather something that seems to have  been caused by other events in my physiology.  Though perhaps I am mistaken and I was just unaware of the difficulty and compensated, under my own radar,  in my earlier years.  Who knows. All I know is what is on my plate now, and if nothing else has been learned over the past 34 years, I have certainly learned to adapt.

I toyed with the idea of adding a CapTel phone, and then the online version that Sprint offers, but that still wouldn’t give me the tools to respond the way I need to.  Email and Facebook private messaging seems more logical as I can digest the information and reply appropriately.  On some days I don’t even log on, I usually pop in for a few minutes, in the midst of the constant tasks surrounding Alex and my therapies and keeping him fed these days.  Communicating this way allows me to communicate effectively, as though I do not have CAPD and as though I do not have Asperger’s.  I don’t text because I don’t have a cell phone.  What?  You heard/read me!  Ok, I have one, but it is for emergencies and thus far I have tallied up a great deal of roll over minutes (on my Virgin pay as you go plan) that I will never use on my little old phone that can’t even go online because it is only slightly more modern than the old brick phones.  The only reason I would want never technology on a cell phone is so I could have a handy camera with me, but then I’d have to take the phone with me, and in this current status I have no idea where it is.  I’m sure it’s plugged in and charging somewhere and if we had to evacuate for a hurricane I’d surely locate it.  I hope.

But I will always be grateful for this technology, allowing me to be somewhat functional in the world, even when I can’t get out of bed, or I can’t get the words out in a spoken form.   I will always be grateful for the community of people who shift focus away from what I can’t do and look at what I can do(preferably not noticing that I may take notes during casual conversation or that I look at their mouths when they talk yet I’m not big on eye contact, especially when I am trying to figure out how to get my words out).  That is my hope for Alex in the future, that people see that amazing person that he is and any deficits are not even noticed as they are part of the whole package of awesome that he truly is.  For me?  All I want is the benefit of the doubt and acceptance. On some days it really seems like that is too much to ask and communication goes haywire, but in the 99% of the time when it does work it is nothing short of miraculous.

Anyway… The picture above is Alex with his gigantic headphones that he uses for his listening therapy (which I will be starting soon and it may help my CAPD.  It has definitely helped Alex.  I will blog about that in the future)… The review of the headphones said “these are not made for people with normal size heads!  these are for people with abnormally giant heads” which I guess was intended as a negative review, but that comment was definitely a major selling point for us as we all have very large heads…

More tomorrow…

xo

B
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Rubik’s Confusion

27 Sep

Rubik’s Confusion

Originally uploaded by CleverGirlBek

Finished the language and speech part of kiddo’s evaluation with the county folks…

Turns out he’s on the upper end of the average range or above it on all things.

Except one.

In receptive language he is severely impaired.

While we had a bunch of work to do before this, now we can focus a little, but I feel like we are snowed in and a little panicked…

Even though this isn’t really news to us. I mean, the term “receptive language” and all of the other language stuff is, well, like a foreign language to me. We knew something was going on, we still don’t know what, but at least we have some validation to our observations which is little comfort, but at the same time, I am forever second guessing myself in a way that I’m going backwards from acceptance and I’m trying to reach for denial with all of my might so maybe I can just curl up with kiddo there and pretend everything is 80’s sitcom normal. But I never get there. And I’m really tired. We could all use the break. But there are no breaks in sight…

So the eval (we haven’t had our formal review yet) was on Thursday and on Friday I came home from a pharmacy run and boy told me a story. Then he told me another one. My little boy stood there and very slowly and meticulously told me something that happened in his day. There was a beginning, a middle, and an end.

He is five.

He told me that he came home and there was a box from amazon.com on the chair. He told me that he looked inside and it was empty. He told me the box didn’t belong on the chair. He told me that he brought the box to the recycling bin. He told me that with Daddy’s help they smashed up the box and put it in the recycling bin.

It was the most gripping account of anything I have ever heard in my entire life.

My little guy doesn’t tell stories. He doesn’t have conversations where he is an active participant in the dance that is a conversation. He blurts stuff. He collects facts. He runs into the room and announces that “The big radio at Target looks like a face” and runs out… He is random yet structured in every part of his life. He does not tell stories. He does not answer questions.

Later that evening I was snuggling with him in the big bed before story time. I asked him about school and the other kids. He has been having a hard time. I asked him why he couldn’t finish his lessons in class today (according to his teacher via my husband).

I expected nothing, except perhaps a change of subject. Lately, his obsession is smoke alarms and fire sprinkler systems, so I was expecting the step by step run down of the sprinkler trigger mechanism.

Instead, he told me- slowly and step by step – that one of the younger kids came over and took his blue colored pencil and broke it so he could not do his lesson.

I was floored.

I asked him if he told the teacher and he said no.

We talked about what to do next time something like that happens.

Of course, from what I know of the way his brain works, the solution we discussed can and will only apply to the very same situation, with the very same child, and the very same lesson, and the very same blue pencil. He is very literal and rigid about these things.

But he told me, and we talked about it.

Today everything was back to the usual. The three of us are just so shell shocked with everything in our lives that we were all pinging off the walls and irritating each other.

But that one glimpse of his problem solving with the box, and what happened at school, are gifts I will not squander, for their rarity is unparalled.

Hopefully, when the rhythm of school begins again in the new week, we’ll be able to have more of these talks.

I don’t think he is understanding it yet, but I think he is working on memorizing conversational and story patterns…If that is the case, I can get that little glimpse into his school day, that may help him more than anything else…

And, faithful reader, if you have read this far, you are probably wondering about the picture…

Hubby was taking a picture of kiddo with his new Rubik’s Cube (he can’t mix up the colors, it will put him over the edge and if he finds out the stickers come off none of us will ever sleep again….) and told him to hold the cube in his hand…

So he is holding the cube in his hand….

Leaps and bounds….

5 Mar

Just a quickie… Doing research on Alex’s thing… Going to docs appointments… Alex came home today with bruises on his knees and shins.Bruises!I couldn’t be happier!As we pulled into a space at school, this morning,  so I could walk him to his classroom  he pointed (accurately! this is new!) at the big slide. His nemesis.  And announced that the big slide is the one he went down at school the previous day (I assumed he went down the small one- which is still a pretty big accomplishment)  He ran around and fell and got banged up today.  Like the other kids. All of a sudden, and it is sudden-since the weekend- he is doing so many amazing things he didn’t do before…  He is working on self-regulation of the things he does in endless repetition- no prompting or assistance from us- he picks a number on the microwave clock for when he will stop doing whatever he is doing (running around the kitchen island with a pinwheel a million times…I’ve seen him do it until he was so exhausted I had to pick him up off of the kitchen floor and put him in bed…) and then he…. drumroll please…. stops. He STOPS!  He even got a bug bite at school today (although, depending on how you ask him, he was bit by a small mosquito, a tarantula, or a scorpion…. Any which way it’s a teensy little bite- and he wanted a bandaid for it- which he usually freaks out about… He asked for one. )….All of this is so huge and wonderful….I made him a label with the labelmaker that says “Mama loves Alex” and stuck it on the inside of the little fence thing that keeps him from rolling out of bed every night… He sounded it out this afternoon and turned to me and said “You love me”.  and once again I had to explain how silly mama cries when she is happy.(he has never been able to do the whole you/me thing….)Huge. Gigantic leaps.  

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