Tag Archives: neurological

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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No Returns Without Receipt.

14 Apr

I promise things will be more upbeat and accidental thong-esque shortly.
Really.
Promise.

Here’s some good news: baldguy started training for his census job yesterday! The first work he has had in 20 months! So proud of him! I became an Auntie this week when my baby brother and his wonderful wife welcomed their gorgeous baby girl! I hope to get out to OH later this year (pending me being patched up) to meet everyone in person!

Ok, now back to the serious-ish stuff.

So here are my questions for you today.
1. Have you ever had a headache so intense that you lost the ability to comprehend language? I swear I almost said “NARM!” (Six Feet Under) today because I couldn’t find words or understand them. Alex was sweet and hung out with me on my bed until I regained the gift of gab. He really is a wonder, a gift, a miracle. Best kid ever.

2. (and this one is from our local news station) Should adoptive parents be able to return their adopted children? Vote below!

(sorry. this picture was just too perfect.)

No Returns Without Receipt

I’m a little scared to ask my adoptive parents how they would vote. Mostly because my head is just a ball of intense pain and standing in line at Adoptions R’US while the clerk tries to find the 34 year old receipt in the system and my mom makes my dad handle the return while she browses for a sportier model just sounds like torture.

I kid. Well, there’s always a wee bit o’ truth and honey in there for you.

I’m planning a longer bit on adoption, as it has been coming up so frequently lately- news, blogs, twitter, etc… I just kind of want to put my perspective (as an adult adoptee with multiple disabilities) on these issues… But for now…What are your thoughts?

Is returning an adopted child screaming of equality? The next thing you know, natural born are going to be demanding to be returned as well. And frankly, there are some rather sizeable physical limitations to that scenario.

Anyway,
I will call the doc in the morning. I just can’t get comfortable. I am reading quite a bit though, as the Kindle is light enough that I can lock up my elby-bones and read while resting flat. As of this evening though even pancaking myself on the bed isn’t easing the pain. So I’m up. For now. Until meds kick in. They don’t even take a nip out of the pain, but they make me sleepy and take the edge off the raw pain*-adrenaline cocktail that is ruling my life lately.

xo
B

*and really I’m not a big baby. I have been through some crazy shidoobi in my day, especially with medical stuff. I have a hugely high pain tolerance and between that and my Asperger’s I think I’m not really making how bad the pain really is clear enough to the docs. I’m kind of a goofy girl, but I get really quiet and mellow and calm with pain. I think I calculate everything more precisely, so as to not trigger more pain or damage.

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Autism & Testing 1-2-3…

21 Oct

Originally uploaded by CleverIndie

This is from our local Autism Speaks’ Facebook page:
***Please note that the Care Mobile will also be at the Autism Speaks SWFL Walk Now for Autism on November 7 at Estero Community Park*****

The Children’s Hospital of Southwest Florida, in partnership with the Ronald McDonald House Charities of Southwest Florida, will offer free monthly autism spectrum disorder screening for toddlers 18 months to 36 months of age.

The first screening will be held Nov. 6 from 9:30 a.m. to 2 p.m. in the Ronald McDonald Care Mobile, located in the Cape Coral Hospital parking lot. Additional screenings will be conducted monthly at different locations across Lee County.

It is estimated that one in every 150 children is diagnosed with some form of ASD, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.

That’s why parents are encouraged to bring their toddlers to the Ronald McDonald Care Mobile for a free screening. Clinicians will use the M-CHAT, with Denver Developmental Screening Tool to assess the toddlers. The screening is not intended to make a definitive ASD diagnosis, but rather to determine whether your child may be at risk and needs further evaluation.

Medical consultants for the project stress that an early diagnosis can make a vast difference for toddlers and their families. They say early intensive behavioral intervention, or EIBI, can make an immense difference not just in the development of the child, but in their families as well.

The ASD screening is conducted by the Neurosciences Center at TCH, under the guidance of pediatric neurologist Jose Colon, MD, MPH, and pediatric psychiatrist Marianne Krouk, DO. The onsite screenings will be administered by an Advanced Registered Nurse Practitioner, who has extensive training and experience in typical child development and developmental disorders.

A physician referral is not required. To schedule a screening, please call 239-985-3608.”

If you have any concerns, I’d make an appointment. For those who think that a pediatrician would have mentioned something during the annual checkup, I wouldn’t put all of my trust in that, though it is getting better. Remember, getting clarification and help for you and your child, is the best thing for your kid and their future, and the earlier, the better.

Just wanted to share….Hope this helps someone…
xo
Bek

Old pictures and updates…

10 Mar

Found this today.. This is Alex and me. Just before his 1st birthday, he was admitted to Children’s Hospital in Boston for every neurological test except the one the doctor wanted him admitted for (an MRI).  The cribs are solid steel and built like tanks. The nurse told me I could climb in if I wanted to…So I did.

Bek & Lexo the Great (2004)

Bek & Lexo the Great (2004) *click for all blog entries about Alex...*

Anyway, I love this picture and so does Alex and I just felt like sharing on this sleepy Tuesday night. (Can you believe how big he has gotten? Can you believe that his head is now only a couple of centimeters smaller than mine? And mine is in the >98% to begin with!)

For those of you that are curious, we still don’t have results on my MRI from last Monday (yes, it has been almost 9 days. We were supposed to have the report within 24-48 hours.  The neurologist’s office finds this odd as well but hopefully the radiology peeps are just reading and rereading it and writing a thorough report).  I am still having the jello legs/weakness thing and the arm thing. I’ll post when we have more info.  Needless to say I am steering clear of power tools for the time being, but never fear! I have quite a few pieces in my arsenal that you have not seen yet! So I will be posting those and also planning for a “Move us the heck out of Florida to anywhere with an increased likelihood of Jeff finding a job and more options to help Alex rock even more Fund” grab-bag/mystery sachet/container o’surprises thingeroo fundraiser in the near future… So keep those eyeballs on this space and keep your fingers crossed that we get some sort of an answer soon so we can get back to whatever it is we do here.

To make it easier to stay abreast of Be Clever/CleverIndie.com news you can subscribe via email!  Click me!

Hugs all around,

xo

Bek

International Ataxia Awareness Day

25 Sep

Today is International Ataxia Awareness Day.

Never heard of Ataxia? I had never heard of it either, until I met Auntie Patti.

Ataxia is a slow moving and unstoppable thief.

As a bystander, you feel powerless.

We aren’t totally powerless.

Please take 5 minutes today to read up here:

Ataxia Fact Sheet

Ataxia.org

Wikipedia’s easily digestible info on Ataxia is here:

http://en.wikipedia.org/wiki/Ataxia

Sadly and tragically, Auntie Patti passed away a week ago today. To promote and assist further research please consider a donation to the National Ataxia Foundation are appreciated – if you would like to make a donation of any size you may do so here

(if you do donate please select “research giving” and “sporadic ataxia” in the drop down menu… Please consider donating in memory of Patricia Benyo. Thank you.)

*hugs*

B

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