Alohomora

As a preface to this post, Mackie has asked me to share the framing of what was happening to him – back right after Christmas, I began to see some odd spelling patterns when we would sit and try to write blogs or do any daily conversing. Nonwords were appearing midsentence. These nonwords would follow typical word structure, but had no meaning. He was also struggling to get out basic thoughts, and his grammar took a nosedive. Verbs and pronouns would drop out – at first I thought we were looking at a form of writer’s block. Many spellers who get into open communication have some moments when emotions are just a bit overwhelming and it can interfere with the motor action of pointing or typing.

As the weeks passed, and his frustration level increased, I knew that he was getting upset because his freedom was now compromised. It is incredibly hard to have a means to access the freedom, only to find your body betraying you yet again. Pressing him in the moments when the interference seemed to be less finally brought us to two pieces of information: one, that he was not sleeping well, and having terrible, vivid nightmares. We made changes, tweaked, got into a new routine, and that opened the gateway to the next piece – that he was having equally terrible headaches. His “winsome fears” as he just labeled them to me, were legion – that he was having seizures, that he had somehow had a stroke, that he had a brain tumor. We addressed it with out doctor as quickly as possible in order to rule out any of these fears, and I’m happy to say that none of them apply to our ordinary autistic guy. He was able to breathe a HUGE sigh of relief, regroup, and focus back on trying to get back to spelling, blogging, and spreading the mission of helping other nonspeakers. – At the bottom of the blog post is our gofundme. We are within sight of reaching our initial goal, but read on, and let Mackie’s words take you there. – Mackie’s mom

Very good knowing that nothing is very wrong with me – am feeling so much less fearful – doing the ct scan did feel freeing – very really i’m feeling happier than have been in months – changes your outlook – time on world you love is so fleeting that unless you make the most of it you lose frankly great life moments – i lost some time when i did not believe great things were happening in my brain – but now in thankfully very blessed circumstances my brain is just fine

grateful that you made free some meaningful time to make sure things were healthy going just really fine – Have grateful feelings to be much healthier than i feared

I believe change is possible great things should bring very thankful time – i just pray that brain activity goes back to what it was before december

Now i want to focus on getting help to other nonspeakers through spelling to communicate based in virginia please support our mission and send my cousin to growing kids therapy center – very freeing time to come for him soon and we need you to help us to help him

https://www.gofundme.com/CTnonverbalkids

As always, the words are Mackie’s, and they are posted with his permission and desire to share them on his own blog, with whomever happens to read! His sentences are lightly edited with hyphens to make clear separate thoughts.

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Ever forward

So, after thirteen years of being an at-home mom, I picked myself up and went back to work. Dipped a toe in for three hours a day at first, and now, a few years on, full-time employment. It is not easy. We live in a rather small space, and we are not rather small ourselves, neither in size nor our dreams.

We hauled ourselves, dog included, all the way to Missouri for our niece’s wedding last year, and then to Virginia. I had sneakily slipped in (and the stars aligned) an appointment with our outside SLP. Wanting to make sure my husband was there this time, because he hadn’t been the first time, and wasn’t quite sure about this communication method for our son. If you want to know a little more of what I mean by this, by all means go check out his blog here on wordpress – The True Adventures of Just an Ordinary Autistic Guy – where he talks about his life and journey as a non-speaking austistic dude.

My husband is a great guy, an analytical mind who sees foremost things in logic, and engineering precision – he’s a database geek, a logistics engineer, and utterly practical. His antenna were up that day as we headed to our first of two sessions, as he called it, his “BS meter”. On our way back to the hotel that evening, however, he apologized to our fifteen year-old, and we made our first step into what has become a footrace to keep up with our son’s pace of acquisition.

We’re due to go back to Growing Kids Therapy Center again this summer. And I’m going to do training with them for six months, to become a “cohort” – someone who has the basics of supporting spellers like my son.

All this and more has pulled me along in the current for quite a long time now. I don’t always have time to get the sleep I want, let alone have five minutes to write (or the brain cells firing all together, all at the same time). But I fit in what I can, where and when I can.

I pulled down the sequels to the two series I started, because it just started feeling more and more as though they weren’t “right”, weren’t finished and polished, and I hated that feeling of having something out there that I hadn’t spent as much time on as the first two books had warranted. I don’t know when that time will come. If it will come. I’ll just keep chipping away, hoping that someday it will all feel right – in form and time – and it will get sent back out into the ether again.

Until then, there’s s**t that’s gotta be done. Big time s**t, because I have a kid who is serious about going to college, being an activist, and saving other nonspeakers like himself from a prison of silence. Like I said, serious, big time stuff. He’s going to meet neurodivergent peers for the first time this summer. He thinks about his future all the time and worries about it all the time. As does his mom.

The Process

Life, reality, pain.

Dig, dig down, dig deep. Stay afloat. Surrender to the current, give over to it. The trick is keeping the shore in sight, watching land drift by without giving in to panic. Death will not take you, it will keep its hand from your brow, if only. If only you stay afloat, and relax into the dragging of the water.

This is life. This is reality. This is pain.

Go along, breathing rapidly at first, force yourself to slow, to take stock. Muscles begin to burn. Death watches from afar, tensed and ready, unmoved. It stretches, cranes to see what will happen, but it does not interfere. Its directive is only to watch, to tinge our lives with the fear of it, to step onto mortal soil only when called.

This is death. This is fear. This is not real.

Thoughts of love flicker through like fever dreams, jumbled up, lacking sense or context. But. The feeling is so there, so strong, so very present. Tears of anguish and joy mix with the salty brine at your chin. How long can you fight? How hard? What will tip the scales?

Breathe. Live. Fight.

Some believe that the act of surrender is a coward’s choice. It is measured, however, in circumstance. It is judged, weighed, like a soul against a feather. Will you continue to float? To fight? To dance along like a feather on a gust of wind? Will you reach toward each gasp of air? Embrace the pain and make it yours?

Illuminate? Or extinguish?

There is a price. Always. The ferryman of death even demands his due. Nobody remembers that anymore. No one wonders what the cost of entry to the afterlife will be. Breathe. Glance towards the headland, keep it in sight. Take your moment as it comes. Swim out of the pulling, grasping fingers of the current. Out of reach.

Toward. Go forward.

Leave behind thoughts of the open water. Do not wonder what might have been. Focus. See the sand and fish below. They are closer than just a moment before. Really look. Do not ever take it for granted again. Touch down. Feel the grit between your toes, and breathe. Feel your muscles for the first time, as they tremor and burn from the fight.

You are safe. You are alive. The pain lets you know it.

Ups and downs

Here we are again, another new year.

The whole of last year was spent writing two more books that I self-published, plus a mini-series. It was good to keep to a strict schedule, to write purposefully every day. It got so I was even able to photoshop my own covers and stop worrying about someone else meeting my deadline. I have to thank dreamstime.com for providing a very affordable means of finding beautiful images to play with in photoshop as well. They are awesome and easy to use, and the copyright info is cut and paste. Simplicity itself.

Summer came and went, sliding out of consciousness too easily…maybe because my kids are so much older now. We didn’t have many of the usual squabbles. But also because I was sooooooo tired all the time. And it got to be the usual. Fight through each day, and go to sleep immediately upon hitting the pillow at night. My doctor (a PA from Australia, actually) told me in November that I had a B12 deficiency, following my yearly well visit. That certainly explained a few things.

But here we are, months into taking supplements, and not a huge improvement. Don’t get me wrong, I still hoist myself out the door three days a week to run. It has to happen, or I go cuckoo. But the little things, like the overall tiredness, dropping things all the time…not better yet. Have to hope that it will get there…believe it will.

Between that and a multitude of other concerns that have kept me busy, I have not written a blessed thing. The desire is there, the ideas are there. The rest will have to come in its own time, just like the other stuff.

In the meantime, please consider signing the petition to free Neli Latson, a young autistic man in Virginia who has been imprisoned since 2010 in a terrible miscarriage of justice. His story is the stuff that parents’ nightmares are made of – I know, because he could be my son.

All you need is love

When I think of this song, I think of Love Actually. And while the Beatles were undoubtedly chemically enhanced at that stage of their writing and recording career, they had the truth of it. Love lights up the darkest places in life.

It gets challenged. All the time. Every day. And sometimes it isn’t easy to look at.

Love is brave enough to dress in balaclava ski masks and perform punk rock protest in the streets. Love is bold enough to stick it out when the person you love is horribly changed in the blink of an eye. Love is tough enough to trust others to hold you and keep you at your most vulnerable, like how a friend of mine helps photograph stillborn babies with their grieving parents.

Love is standing up and speaking for the voiceless, even when it means you may be personally attacked.

It requires a great deal of inner dialogue, examination of the issues, and emotional durability. I’m not great at that last one, because it is HARD not to take feedback personally. The alternative is to stay silent. It’s not in my nature to do that, either. But our social landscape is shifting, and becoming a place that most people little recognize.

What are we to do in this society, I wonder, when everyone can vomit their anger and rage so effectively – so lethally – online? When it results in young kids committing suicide? Has normally reasonable people “screaming” in caps at one another? Allows perfect strangers to pass judgment over other perfect strangers? Send mass numbers of death threats in the matter of minutes?

Is this the fabric of society these days? We have no way of predicting for sure – just as we have no way of knowing what this landscape will look like in ten or twenty years. I think it bears each of us asking ourselves certain questions as we interact, probably. And that’s best left up to the individual, but for the ability to exert the control to go away from the computer for several minutes, step outside, breathe, and let go of reaction in favor of reason. By the time anyone might find their way back to what we were about to click “send” or “publish” on, our thoughts might have already shifted.

This brings us back to the idea of love, and what it means as we move into a brave new world. Love is never perfect, but it is forgiving. It might mean that you delete that response that had your blood boiling a moment before. Filtering your feed you don’t see the annoying political views from someone you otherwise like a lot. Not worrying when someone misinterprets your use of a phrase because you forgot to emphasize a particular word. Love lets it go.

Love certainly means speaking up when something is not right, but it also has a lot to do with accepting that mistakes and misunderstandings are more common than anything else we do in this life. And I begin to think that, instead of getting mad and commenting or posting, speaking up in favor of what you believe might be more effective if you get into the root of things – go and give your time to the causes you believe in, instead of yelling about them, and some of those troubling things might begin to get solved. Whatever it might be, if you approach it with love and compassion, there’s no chance it won’t be a good thing.

 

Wandering through the (dis)comfort zone

I hope I’m not the only one who procrastinates and avoids things…it’s a not very helpful habit, and keeps having unintentional side effects. I hate this about myself, but it’s a work in progress as far as getting rid of it. It was a long time in being built…I suppose we all seek out things that are soothing or pleasant…I just tend to avoid certain things until, say, it’s the night before a paper is due. That was for sure my college M.O. – and it typically had mixed results.

Those mixed results eventually taught me that I needed to strategize better at that type of work (it hasn’t spread acorss the spectrum yet) – but I remember professors at UNC giving me a gimlet eye a lot of the time. I was a laissez faire student once I got there (after hammering out a 3.8 gpa at my CC, it was zeroed out by transferring – a little depressing) – putting in effort precisely where needed, and not a ton more. But I remember my damned Poli Sci class (the one and only I had to take) – American Political Theory – the prof was just a little older than we were (and was let go after our term) and wrote on my massive term paper, “You proved your point, but I disagree with it.” And the grade to go with it was Depressing. At a university the size of UNC, you quickly find that you can’t fight the system too much – it will either bite you back, or ignore you.

Now, fifteen years later, I’m still doing that night before thing. What is it, the burn of adrenaline and fear, is that what makes you able to set to and pound out something right at the wire? Sweaty palms, upset stomach, eyes stinging…here we go again…. I’d like to have everything tidy and under control, for once in my addlepated existence.

My sister is good at doing what needs to be done, when it ought to be done. She’s got the opposite issue – the burning need to just do it, or not be able to sleep until it’s done. Well, except for a scientific paper she cowrote with her boss…but he kept changing things along the way, so I think that wasn’t entirely her fault. Which is more challenging to deal with, though, or is it the same effect – is there no real escape from that sense of panic – I guess getting it over with probably is a tiny bit better, if only by virtue of not prolonging the agony.

I’m sorta stuck there right now with the book – I need to finish it – I want to finish it – but there’s something hanging me up. I shouldn’t be too afraid by now…except I still haven’t seen any mediocre or negative reviews on the first book, and I feel like I’m waiting for a shoe to drop. I also need to put the first book onto the other sites still. I’m my only dictator of deadline – which doesn’t go well for an ADD procrastinator like me – but I guess I can overcome that. *sigh* Time to take the car to the repair shop.