2/24/2015

Reinforcements




Some things you see coming. You know it's ahead and you make preparations. You fortify yourself and get ready.

But what do you do when you go from having the best time of your working life, in the middle of things, working hard, putting in more hours than ever to literally fall flat on your face? And not just once, from one fall, but from multiple falls? What do you do when your words fail you and the most interesting and incorrect words come out in place of what you meant to say? What happens when even in your head you fight aphasia? And when those words stick for the item? When it becomes a permanent replacement? What happens when you don't even notice you are screwing up your words?

 Doctor's appointments. MRIs. Blood tests. Nerve conduction studies. Specialists. No answers, some answers, recommendations to keep going to bigger specialists hours away. No thanks. I'll learn to cope since there's no fix.

Diabetic neuropathy to add to 27 years of fibromyalgia along with the other issues that make life interesting and challenging. Learning to accept that those burning patches are there to stay, and figuring out how to manage them by acknowledging them and then boxing them up in my mind, a container for each toe, each finger, each foot, each leg. Going through this routine until the pain is boxed up or I've fallen asleep.

And a walker. And a cane for when the walker won't work for the situation. And frustration at having to concede that driving is risky given the dizziness and brain fog, so that freedom is taken away 99% of the time. Learning to lean on my family and friends and admit weakness. And live with it. Own it. Get around it. Give it the finger when I've got bigger plans. Learning to plan around what I want to do so that I can do it. And accepting the price of that.

 

And since my fingertips are numb, and my wrists hurt, someone else gets my meds for me or she's picking up the whole bottle's worth that I've dropped. 

Learning to work from home, to teach online, to figure out how to get back into the classroom in the fall. Living with being home 24/7 and days that take on a regularity of being awake for awhile, asleep for awhile, and in pain all the time because the meds that work on the fibro and neuropathy also make me an even greater fall risk and give me a foggier brain. 
 


Surveying the living room from my recliner and watching the cats rub all over the walker, the dogs play under it, the kids occasionally sit in it. Accepting that it has become a part of the background in the three months it's been here. The cats even take turns being wheeled into the bedroom when I go that way for a nap. The dogs run ahead--they know when nap time is. I've gotten used to it, to what it is, what the cane is, what the permanent disability placard is: reinforcements.

With my walker, I can zoom. And I do. Sometimes, it feels close to flying, and there is joy in the zoom. With my cane, I feel older, more fragile. I trust the walker. I do not trust the cane. I certainly do not trust me. My balance is awful and I fall a lot. Into walls, bookcases, cabinets. Onto the ground. So, walker it is. Shiny and red and loved by cats who get rides and take naps on it.



Plus, I can match my outfits to it. As long as I don't start thinking I need a walker in every color. You know?


2/20/2015

Dawn Marcotte: Resources to Help Autistic Students Choose the Right College

Finding the right college is key to successfully graduating and lists like the Top 10 Colleges for Autistic Students can only go so far. 
Here are a few other resources to check before making any decisions.
ASAN's Navigating College Handbook
The Navigating College Handbook was published in 2011. This book was written by autistic students, for autistic students and its point of view is unique. The book is available for free at their website, Navigating College http://navigatingcollege.org/download.php). The ebook contains information on getting academic accommodations, housing tips, health and safety, advocacy and social life. 
Online Websites
Searching for college is a big business online. There are many websites with information about colleges across the country. Unfortunately few of them include any information on the support services for autistic students. 
ThinkCollege.net is a web site that specifically targets autistic students. The site has a listing of colleges, universities and post-secondary programs designed for autistic students. However the programs they list are submitted to them for inclusion on the list and the list is far from complete. If students have a specific school in mind, checking this site to see what programs are available is a good first step. However if the school is not listed here, it doesn't mean they don't have support programs available. 
Another website to check is SpectrumU (https://spectrumu.wordpress.com/) This site lists many colleges in alphabetical order or by type of university. However this is in a list format, not a searchable database. The site does have some excellent information on searching for colleges with appropriate services.
Print Resources
Consumer Reports has done a review of online and print resources for college guides and comparisons. While none of the online resources they recommend address services for autistic students several of the print books do.
The College Handbook by the College Board, Guide to Colleges by Fiske and Profiles of American colleges by Barron's are all top resources and all include information on special services. College Handbook is actually the number one recommended book resource as it includes information on costs, educational quality, environment and has the largest number of schools included in the guide at 3,800. This may be a good first look to understand what is available and learn the vocabulary that goes with a school search.
Online Forums
There are also several forums where students and parents can go to learn more about college and post-secondary life from people who are living it. 
·         Aspie Central (https://www.aspiescentral.com/forums/education-and-employment.24/)
·         Wrong Planet (www.wrongplanet.net)
·         College Confidential (http://talk.collegeconfidential.com/college-search-selection/1741671-finding-a-college-for-autistic-students.html?new=1)
These forums are all active and provide valuable information and discussions on college and other post-secondary options.
Other Options
Not every autistic student is going to attend a college with support services. However there are independent programs who will provide needed support at the college or university of choice. These programs are fee based and vary widely in cost and services. 
Here are a few examples:
·         AHEADD - http://www.aheadd.org/
·         College Internship Program - http://cipworldwide.org/
·         College Living Experience - http://www.experiencecle.com/home.aspx
·         College Steps Program - http://www.collegesteps.org/
·         Student Curriculum on Resilient Education - http://www.scoreforcollege.org/propel
Autistic students can be successful in college and beyond with the right supports in place. 
 Dawn Marcotte is the CEO of WWW.ASD-DR.com, a website designed to help teens and young adults on the spectrum live to their highest potential.

2/04/2015

Alone (mostly) in the dark

He sleeps in the next room, gently snoring, my dog curled next to him, also gently snoring. I sneak away, quietly, grabbing a pillow, my tea, my walker and his dog, establishing myself in my recliner, pillow behind my head, covers grabbed off the couch and his recliner so that I am still covered in a half dozen blankets. His dog vied for control of my lap, briefly, with one of the big ginger cats and lost.

I've lain here in the dark living room where the ginger's purrs drown out the noise from my bedroom, but not the noise coming from the kids' rooms, where delighted girly laughter peals out and I can't for a minute imagine stopping their fun. 

I'm up late, and my body protests the hour but the cat is kneading my belly, determined to shape it it suit his needs or keep me up all night trying. 

He'll leave me little choice but to banish him, and if you have cats you know how useless banishment is. So, I'll give some more time. It's a close to a massage as I'm likely to get, anyway.

1/14/2015

If I Let Myself




If I let it take up normal space, become a natural part of my background, then surely the crushing grief I feel when I allow myself to really look at it and all the things, good (mobility safely) and difficult (disability made visible with all that entails, the losses, the challenges, the inability to hide my challenges) are allowed through my barriers, then surely, acceptance and even appreciation will follow. Maybe not today. Maybe not tomorrow.

It's like Frost's poem about the death of a young boy. We cannot look too long, tarry there. We must keep moving forward. 

So, grief trickles in and ebbs away, never staying long enough for me to rail against the situation. 

Being home with my three children and corralling them in between my naps, watching them grow into caregivers of me and our furry family members with a grace reminiscent of my maternal grandmother: I fully recognize that there are many, many blessings attendant with the hassles, frustrations and disappointments of permanent Disabilty. It is hard to spend any appreciable time lamenting the losses before I am picked up (metaphorically, of course) and deposited into my children's rich, mythical worlds.

I am not full of grace, though, and find that soft serve ice cream cones a few times a week are necessary to put out my dragon's fire. Would that it were whiskey, but I am not foolish enough to go there. That would only fuel the fire.

Ice cream cones are happiness inducers.

11/07/2014

When the Universe Wants One's Attention

I was doing something for my comp class, hyperlinking to a post on the saying "The only disability is a bad attitude," and went ahead and reread my piece from 18 months ago. Ummm. Given my current limitations, it feels like it was one of those attempts by the universe (or God, as you please) to get my attention. So I thought, I haven't written a post in a while, and I haven't been really communicating that much with my friends, either, on a lot of the stuff that's going on, and I clicked over to the blog, and my last post, called "The Cost of Admission," written almost a month ago, pops on screen.


First I'm hit with these words, from the piece 18 months ago:

It's a constant quote going around the disability community: Scott Hamilton's "The only disability is a bad attitude." Of course, it's usually coupled with the picture of an unnamed child with a disability, and it tends to get two reactions: passed around as a positive message or harangued as inspiration porn.
What bothers me most, though, is the quote itself. According to Cleveland Clinic, Hamilton said it before undergoing treatment for testicular cancer. You know, an able bodied person saying this. A cancer diagnosis does not make a person disabled in and of itself.
Whether Hamilton meant to suggest that non-able bodied people were only disabled because they had a no-can-do attitude or not is unclear, and the quote, uttered in 1997, has gone on to have a life of its own.
It's a comforting thought--that if we have a can-do attitude we can overcome disability, but it's bullshit and unfairly stigmatizes those individuals who are disabled, remain disabled, and for whom no amount of can-do attitude is going to overcome a hostile environment and serious, significant impairments.
It's also a platitude, a saying that means nothing at all and offers no real help to individuals who might be suffering. Say it to someone enduring unremitting depression. Go ahead. If the person isn't too down in the dumps to clock you, maybe one of his family members or friends who understands the chains depression puts on a person will. And then you can comfort yourself with that empty platitude. See where it gets you.
There is much we can do to mitigate disability. There is a lot, when given the opportunity, the support, the technology, and the education, that we can do as a society to lessen disabilities, even if impairments cannot be cured/removed.
And certainly, having an attitude that is positive will help (and that goes for everyone--we must believe that we can make a difference, can create a more inclusive, accepting society), but it isn't like clicking our heels three times and just wishing so.
Any meme that goes around objectifying unnamed disabled individuals while pushing platitudes, in the end, does an injustice to us all.

A lot of the piece really hits home still, having spent much of this year depressed, a whole lot more depressed than my family realizes. The kind of depression where I had to work very, very hard to hold on.

When it gets really bad in my mind, I clam up. I've been a napper for the last several years because of health issues, which have decided to up the anty this past month, so no one gave any thought to my pulling back being due to depression, and it's entirely plausible that no one even noticed.

People can't notice what you won't show them.

A month ago, despite being ill above and beyond my normal junk, I wrote this:


Some days, nothing goes the way we plan. Some days, our plans are completely derailed and we want to throw our hands up in the air and give up. Sometimes those days stretch into weeks and months. We can't see any light, not even a glimmer. We waiver, we weaken, and we surrender.


The way we surrender, though, determines our outcome. Do we surrender and give up completely or do we surrender our illusion of control and let go?

It's not been an easy few months, and I would, if I believed in luck, say we've been short on it. But I don't believe in luck, and despite or because of the law of large numbers and all those other cognitive biases I know because I teach them, I greet unexpected events as opportunities and gifts, the chance to grow, to bend, to let our pent up emotions sometimes.
...
Today was like any other day. It had its highs and its lows, its wow moments and its heart aching moments.

I choose to surrender and open myself up to life in all its painful majesty, to accept the cost of admission, which is unbelievably high but undoubtedly worth it.

Since that day, though, we've had to let Lucy go (on the 15th, something we had had time to prepare for) and Little Girl (on the 29th, something we had less than an hour between realizing it had to be done and it being done).

 
Lucy, perking up as we put her in the car.
Under the blanket, though, 
was a cat who a month or so earlier
 weighed in at 17 pounds and who died at 7 pounds.

Little Girl, about four months old, 
a few weeks before we lost her.
At the time, we thought we had a
chance of getting the feline herpes virus
in remission. On the 29th, she went from
having relatively clear eyes to a massive infection 
in her left one that left that whole side of face swollen.


Bad enough to let go of these sweet souls. It's all fresh enough that today Bobby asked where Lucy was so he could put her with the other cats in my bathroom so we could open the back door and let the fresh, cool air in.

In this past month, though, I stopped being able to drag my exhausted self around, had three falls, managed to garble sentences instead of just substituting words, and was forced to admit I couldn't keep going as things were. I'm teaching the rest of the semester online and my life this past nine days has been sleep, grade and eat, sleep, grade and eat, and so on.

Exhaustion is always there, and the mental fogginess is wearisome. I've had bloodwork that has ruled out RA and lupus, and my WBC is fine, but there is elevated inflammation in my blood. My brain MRI was normal, thankfully.

And, miracle of miracles, my diabetes is under diet control.

I will see the neurologist on the 19th and maybe we'll get to the bottom of this. Maybe it's a huge fibro flair and time catching up with me. Maybe it's that and something more.

Even Rick's been having fun--he had a nuclear stress test that showed abnormalities (it did six years ago, too), so he will have a heart cath on the 20th. His heart, my head...well, we are middle aged, after all.


So do I still think that whole platitude thing is dangerous junk? You bet. A can-do attitude with a hell-no body can lead to some serious frustration and overdoing and that just makes things worse. Being realistic and kind to yourself is a whole lot better.

Do I still think it's all worth the cost of admission, as my heart hurts for a cat we loved for 11 years and a kitten we loved for three months? And as I stumble around the house and sleep more hours than I want to in order to get through the ones I'm awake? And as we face some uncertainty about whether I'll get back to where I can walk and talk normally instead of being a rag doll that collapses for no reason? And whether Rick's heart will need a little help?

Yeah...I still do. It's a question I ask myself alot. I suspect as long as the answer is yes, in the end, I'm okay. I'm frustrated, but I'm ready to keep on going, keep working to hold the depression at bay. I can see a lot of my kids and their wonderful selves from my chair when I am awake. And I delight in conversations with them. And I hold the girls when they cry, as they do their homeschooling and realize how screwed up and unjust this world really is. I watch them pick themselves back up and dig back into territory that is not for the faint of heart. I watch the boy and his generous spirit and his enjoyment in discussin geek things with his sisters. I listen to them, when they are all three in his bedroom playing video games, both enjoying themselves and laughing and arguing about various details. And I still have a lot of animals to love on and who love on me. And a sweet husband who held my hand the entire time I was having a panic attack in the MRI machine. 

It's still worth it. I wouldn't change a thing as it would change everything. I'd like some answers, though, and I'd like to wish myself well or work my way there, whatever it takes, but I'll choose to learn what I can from the universe on whatever path it places me.

But please don't tell me the only disability is a bad attitude or you'll see both in one woman.