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Autism: Possible, Not Easy

It makes it possible. Not easy. Not easy.

These are the words that often run through my head as I am riding. I have been riding my bike a lot lately. My bike. Our bike. We share it. I ride it. A lot.

A couple of months ago my husband got a call from his brother. Not at all unusual. He came to my room where I was writing in my journal and asked, “Do you think (our son) would like an electric bike?”

He wouldn’t. He doesn’t like bikes. He doesn’t much like being outside – if it is too hot, or too cold, or too ‘buggy,’ he doesn’t want to go at all. Plus he finds bikes uncomfortable. We might think it would be useful for him – since he doesn’t drive, and there is no bus service here, and we are surrounded by houses and farms (no stores or anything close to us.) We might think it would be good for him, but he wouldn’t.

“No, he doesn’t like bikes,” I answered, “He thinks they’re uncomfortable.”

I would like an electric bike, though,” I told him.

He talked with his brother some more, and a few weeks later, we had an electric bike. Since my husband’s nephew works as a director for the company in Canada, and two of my husband’s brothers also bought e-bikes at the same time, we got an amazing deal.

Still I felt guilty. When someone buys me something, I always feel guilty. It comes from my childhood. It comes from trauma. Plus I worried that I wouldn’t use it enough, or was spending too much (I don’t work, after all) or like most of my decisions, it would be a bad choice.

And then the bike arrived, and my husband rode it home from his brother’s house.

As another brother (my husband has lots of brothers!) drove in with our van (that we bought off him 10 years ago – though I guess that’s not important to the story) and visited with me while we waited, I understood that my husband wanted the bike, too.

In fact, by the words of the people he knows that have talked to me about the bike, it sounds like we got the bike for him. I am okay with that. It removes some of the guilt of having the bike bought for me. We did get a great discount – but it is still an e-bike, and still wasn’t cheap.

Anyway, he works 4 days a week, and is too tired most of the time when he isn’t working to want to ride. At the point of this writing, he has gone about 35km, and I have gone more than 420km!

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The thing is, where we live in British Columbia, Canada, every direction has hills. Steep hills. So since moving here, riding has been pretty much impossible for me. Other people might be able to do the hills. I have too many barriers. It didn’t matter how hard I tried, I couldn’t do them. I couldn’t.

And then we got the e-bike. And then I started to ride. And unlike driving a car, I found that riding a bike calms me – even if it is technically more dangerous. I also understood (though I have lived in this house more than 14 years) that half a kilometre away from me are rural properties – for a long ways. I love riding by the farms, and seeing the animals and trees and land. I love that I can ride, and hardly any vehicles come past me. I love it!

So I ride. Day after day. First 5km a day, then 10. Then one day I decided to ride to the beach 5km away. It is a short drive, but I never drive it, so I didn’t really know what to expect. Half the way there, I started saying, “uh-oh!” It was all downhill. So steep downhill that I pretty much had to ride the brake. I didn’t know – and now I would have to ride back up.

On the way home, I honestly thought I would die. My chest hurt so bad, and I couldn’t breathe. I prayed the whole time to be kept alive for the sake of ‘my girls’ (my dogs) and my son. When I got home I told my son I wouldn’t likely do that trip often.

Two days later, I did the trip again. Three days after that I did the trip again. By the fourth trip, I didn’t feel it was enough, and (after getting back up that hill) I took a detour to make the trip longer. I now ride about 15km each day – and I seek out the hills.

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But the hills??? They aren’t easy. Not even on an electric bike. It doesn’t make it easy, but it does make it possible.

And as I was considering this thought again, I started comparing it to accommodations, supports, and income assistance for people with disabilities – and I think these are pretty much the same thing (or at least that should be the goal of them.) They don’t make life easier than other people have it. But they should make living with a life quality similar to others without disabilities possible.

Not easy. Possible.

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Autism: Benefits of My Own Space

There was a fun type of game going around Facebook for a while that said to open up your phone (I don’t have one) and click on the middle suggested word twenty times in a row. I was always tempted to try this, but since I had no phone, and my tablet was not near me at the time, I never got around to it – until today.

I am not sharing this on Facebook, but I found my result quite funny, and wanted to share it here. Keep in mind that I am neither fluent in Spanish, nor do I write in Spanish most of the time – but I must use the automated suggestions much more for Spanish than for English; I have been learning Spanish on Duolingo.com for a couple of years, though I got out of the habit nearly a month ago when my routine was changed, and I broke my streak. It is very easy for good habits to be broken for me, and very difficult to get back into them.

All that to explain what I wanted to share. The result of my ‘twenty suggested words’ was: “yo no rechazo a la gente que no tiene nada que ver con el tema de la compra de la casa de la abuela,” which means, “I do not reject people who have nothing to do with the issue of buying grandma’s house .“ (the “a la,” and the “de la” came up as single suggestions, and the phrase ended in “y” (and) so I left that off.

So I guess that is my new motto for life, “I do not reject people who have nothing to do with the issue of buying grandma’s house!” Funny. I laughed so loud, my son had to come up and see what was going on.

I don’t believe that was ever a phrase that I had to translate in my Spanish course, though it sounds like one they would have – like one I translated a lot in the beginning of the course, “Mis elefantes beben leche.” (My elephants drink milk.)

Speaking of Spanish, I am really enjoying being back in my own room. I sleep better, I wake up feeling better, and best of all, I am getting back into good routines.

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For instance, the first thing that came back after moving into the ‘pink room’ was that I started practicing my keyboard again (which I got out of when my brother in law stayed in that room last September.) I thoroughly enjoy it while I am practicing, and spend the rest of the time with worship songs playing through my head (for that is the book I am practicing from.)

Later that week, my husband bought me an ellliptical machine from the thrift store where he works. It is huge and bulky in our living room, and squeaks really loud when I am using it, but I love it! I use it in front of the TV while streaming documentaries on my Chromecast from Netflix. (Wow, there were a lot of words in that sentence that I never used up until a short time ago!)

I am walking my dogs again – though I admit that has so much more to do with the warmer weather than having my own room (it has been hovering just over 0 Celcius this week as opposed to the -10 to -15 Celcius we have had far too long this winter.) Even Clara walked today as the roads were nearly dry for the first time since about November.

Best of all, I am dreaming again. Being in my own room means I can be (pretty much) on my own schedule. It isn’t so much that I am up later than him or anything, but that I am not wondering every moment when he will come in and watch me until I am finished with what I am doing. (Maybe I just felt watched – I always do when someone is near me, but still…) so I am able to focus entirely on what I am doing, and transition on my own terms.

This was a really good move for me!

 

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Autism: Family Time

It has been a good couple of days. Don’t get me wrong, I like visiting with these people – and am amazed by how often we see them, considering they don’t even live on this continent. My own family I hardly ever see, though we could drive to them in five days, or fly there in five hours if we had the money.

The first night we were here, we drove to the beach. Maybe five minutes from our house, and so beautiful – on a clean lake, surrounded by mountains… we live in an amazing part of the world. Just five minutes away, and we never go. I’d like to go, but… well… it is easier staying home, and the anxiety gets too strong, and my husband is too tired, and my son doesn’t like to leave the house, and…

We sat at the beach with our visiting family for about an hour. Maybe a little more. I waded a little, but didn’t swim, as I had my dog with me. She doesn’t like the water, and was even trembling up in my arms. The water was warm, and free of weeds – just as I like it. The beach was sandy, and soft on my toes. We sat at the edge of the beach, on a grassy hill, and just enjoyed the moment – watching the birds soaring on the breeze, watching the swimmers, and the boats going by, talking, and laughing, and watching the trains go by just behind us. It was a good evening.

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Yesterday, my husband was at work. His brother asked if I wanted to go along on their trip to the waterfall, and a hike above it after. My initial response is always, “No!” Stay home, be comfortable, calm the anxiety. Years ago I decided that wasn’t the best answer, and that in a moment like that my answer should be, “Yes.” It is a conscious decision every time, and definitely goes against what I feel in the moment, but I am often glad that I went (once it is over.)

The waterfall is a little over a twenty minute drive from my house. We park, and then walk through this valley filled with trees and other vegetation, and mountains on each side. Even on a hot summer day, it is often cool in there. We follow the path along the stream, until we reach the rushing waterfall on the other end. The sound of the water, and the smell of the forest… so calming, so soothing – even when there are many other people around (which there often are.)

On the other side of the parking lot, there is a trail that leads up above the falls. Though we have taken that trip at least yearly since I moved here sixteen years ago, and often more, I have never done the hike above the falls. My brother in law said he last hiked it with my husband – but my husband’s knees have gotten bad since we were married, and he can no longer do such hikes.

The way up was steep, and I am not used to the climb. I struggled to breathe, my chest and shoulder kept sending out sharp pains, and my face was overheated. I was afraid that I wouldn’t make it – that either a heart attack, or a fainting spell, that would send me down the steep slope to my right would end my life. Mine, and my dog’s with me, as I was carrying her up the hill (she’s only a little dog after all – and even if she could have walked it, the drop made me afraid to let her try.)

I didn’t say a word. I often don’t. I just followed along beside praying that I would make it. Not that I was afraid to die so much – these days situations I think I might not survive leave me thinking, “I’ll see Gryff soon,” (Gryff is my dog that I lost just about 2 months ago.) But it wouldn’t have been… polite?… to die there and leave my brother in law to explain that to my husband and son. Plus there is my son I would be leaving behind – and I don’t want to do that to him.

Obviously we made it – and the view, and the smells, and the exercise were worth it. I was glad to get home, but was also thankful that I went – against my very strong inclination to decline (especially when my husband wasn’t coming, too.) I rested for the afternoon, and in the evening, we played cards. So much fun!

I enjoyed the visit. I most always do. However, I am really looking forward to getting back to the way things ‘should’ be: To my routine. To my diet. To quiet. For I can’t be me when other people are around, and it is so, so, exhausting – and I can already feel myself crashing, and being pulled towards those fixations that help to calm me: drawing floor plans, spending hours on Pinterest, researching and planning things that I will likely not follow through on… living.

 
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Posted by on August 24, 2016 in Autism: Out in Public

 

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Autism: Mental Health and Exercise

It isn’t the easiest thing for a person with low energy, chronic foot pain from being born with club foot, and chronic lower back pain… it isn’t the easiest thing to talk myself into exercising.

When I am camping at the lake, it is easy enough to do something each day. I have to walk down a steep hill to get to the lake. That is where we get our water for washing dishes, and where we have to swim if we want to get clean. I have to be clean, so I will swim. I like swimming – it is talking myself into it that is hard. I get ear aches if the water gets in my ears, or if my head gets cold. I get a sore neck from holding my head out of the water. So I wear a life jacket – but I do swim, and I do feel the muscles in my legs working. Then I have to walk back up that steep hill. I am out of breath and tired at the top, but it feels good.

If it isn’t too windy, I will go kayaking on the lake. I really like kayaking, though I never tried it before this summer, and didn’t know. If I can talk myself into it, I go kayaking, and I feel really good after. Afterwards, I am almost always hot from the workout, and will go swimming. Then there is the climb up the hill. I am tired, but I feel really good.

It is easy to get exercise when I am camping. When I am home, it is a lot harder. A lot of days it is hard to go outside. The neighbours are so close. I might consider jogging, or in-line skating, or riding a bike (if it hadn’t got stolen) but there are neighbours, and I hate feeling like I am watched. When my anxiety is high, as it so often is, the thought of even going outside can seem insurmountable. So most days I would walk the dog in the evening, and (while I am not working, and can do it) clean my house for maybe half an hour a day. Not enough. It doesn’t do anything for me.

I tried the Wii, and it was okay sometimes, but it isn’t enough. It is hard to get motivated. I am so tired, and so achy most of the time, and I just don’t do it.

Then my counselor asked me to get something tight to wear around my waist for deep pressure (it calms me) and weights that I can carry around for the same reason. I took a gift card that my bosses gave me last Christmas, and went shopping. I bought ankle/wrist weights ($14), a tension band for yoga or something ($4), and a stomach wrap ($9). I brought them home, hoping they would help.

The weights calm me when I wear them, so I keep them on most of the day. The stomach wrap (I think it might have been for weight loss or something, I don’t know, I bought it for the pressure) both calms me, and helps with my back issues. I wear that most of the day, too. It makes me sweat (I guess it is supposed to) and I don’t like that feeling, so I wear it over my t-shirt.

Now I run on my re-bounder for 40+ minutes every day, while watching one of my shows on Netflix. It is automatic, I think of my show, not so much what my body is doing. I wear my weights on my wrists during that activity, because I find my feet hurt too much if I wear them on my ankles then. I keep my wrap on, it helps lessen my back pain. I feel really good after, and highly motivated to clean my house every time. It is a good routine.

After cleaning, I still want to move, so I turn on my favourites from YouTube, sit on rubber mats I had from my daycare days, and do rowing exercises that were recommended with my tension wrap. My mind focuses on worship music, as I sing praises to God. My body moves on automatic, and I row for 30+ minutes each day as I am lost in my music. When I get too tired and achy, I start my back stretches that I learned while in my construction classes. The music plays, and I feel really good – even on dark and rainy days!

I don’t have to think of my neighbours during these activities. No one is around to watch me but my son (the only person on earth who doesn’t cause me performance anxiety, and doesn’t come to watch anyway) I don’t even think of the activities, except to start them. If I can push myself to do them, it feels so good, and it really does help to focus and calm me. I wish I had known this before – but then when I am working, the anxiety paralyses me, and I couldn’t have kept it up anyway. It is only now, when I have no choice but to be home, that I could add this into my routine long enough to see the benefits.

Exercise is something my psychiatrist advised, and I know at my next appointment, like my last, she will ask me if I am following through. “Yes? What sort of things are you doing?” she will ask. It is harder to come up with excuses as to why I am not doing it, than it is to find ways to comply… and the secret that I have found? It does help.

When I am unmotivated, depressed, anxious, perseverating – it helps to exercise. It takes me a long time to convince myself of that. It can even feel impossible some days. But it does help.

 

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