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Autism: Letting Go

It isn’t that the entire day was hard, but…

I woke up at 4am as I have been doing far too often lately. Since it is typically after 12am that I finally fall asleep (that takes a couple of hours itself) it is very unfortunate that, less than 4 hours later, I am awake and unable to get back to sleep. It certainly isn’t that I am not tired. In fact, I can’t even get up – I just lie in bed for the next three hours trying unsuccessfully to fall back to sleep.

Needless to say, I have been very tired, and not functioning very well.

There was some cleaning to do – laundry especially. Ever since the city workers came by and blasted out our storm sewers while I had laundry going, it has been prone to flooding. I don’t know if they are connected, but that is the load it started with. The clothes get cleaned fine, but when the washer is spinning, piles of fur and debris (much more than what is reasonable from what went into the wash) pour out with the water into the sink.

If I am not there to catch it, the water floods over the sink to cover the laundry room floor, hallway, and the bathroom beside (where it pours down the drain by the shower.) Such a mess! This has been happening for at least a couple of months now.

Since I have to watch the washer as I do laundry, I stayed downstairs to sort through boxes of food storage containers. I have no idea why we have so many – but they had been sitting in boxes in storage for over a year now, and we don’t really have storage space in our home.

That was exhausting, but I mostly got through it. I put our Christmas tree outside (so the animals wouldn’t eat it) for the thrift store – I was the only one who cared since our kids were moved, and we really haven’t the space for it (we will use a small tabletop one instead.) I left the rest down in the hallway, though I am sure it will annoy my son who rents the space from us since he has a very curious cat.

In the afternoon I spent several hours sorting toys into bags to give away. This was a very painful activity for me. Though our (foster) kids have been gone for over 8 years, and I haven’t even babysat in 7, and have been considering giving these toys away for at least 6 years, it was still exceptionally hard for me.

But I have felt a strong (near constant) prompting over the past few weeks to do this. Because it hurts, I kept blocking the prompting out, saying I wasn’t ready (I would probably never be ready if left to myself, to be honest) and the push kept getting stronger.

So I got the toys sorted and waiting in the upstairs hallway – but as I said, it hurt… a lot!

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So many hopes, dreams, memories, and losses tied up in those toys – and to give them away!!! But they should be played with, and…

I can’t have children, and I can’t go back – both of which frequently cause me a lot of pain in themselves. I am being asked to let go, and though it really does hurt, I know it is the right thing to do.

It was Misty (my newest addition – Chihuahua) who was most concerned as I sat crying, surrounded by piles of toys my children used to play with – though Clara and Molly looked to see what was wrong, too. Sweet girls! I am so very thankful for them, and it is only because of them I was able to answer this call to let go, but…

This is hard!

 

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Autism: Only A Dream

It was only a dream, though I longed to stay there. First my foster son came to me: beaten, fearful, longing for love. “Can he stay here?” the people standing behind him on the porch asked, “He can’t go back there.”

“Of course,” I replied, and took my son inside; still a child; still wanting to be with me; still wanting ‘this’ to be home. From wherever they were, the girls followed close behind.

I read the file belonging to the youngest. “Nguyana” was written at the top. I hadn’t the time to question it; there was so much to do.

I cleaned their rooms and set up their beds. The younger two were still in cribs. I prepared my birth son as best as I could for their homecoming.

I was in the baby’s room, watching the girls play. “I love you,” the preschooler told the baby with strong emotion. “She has grown,” I thought; feeling thankful that they were mine once more.

Their brother walked into the room. “They called her Gooyanna,” he told me, “We didn’t like it.” Well, they were only foster parents, it wasn’t a legal change. “We will call her (by her real name,)” I told him, and he was satisfied.

It was only a dream. It didn’t last long. My children came to me, but when I woke they were gone. I was sad, and longed to return.

They come to me in my dreams. Only my dreams. And I wish I could remain there with them. I awaken sad and broken for only when I am with them do I feel whole.

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Autism: Carrying On

I was feeling better today. Partly I convinced myself that my ‘baby’ would be okay. Also I admitted that it made sense for her foster parents to adopt her, and even to move away – though it did make me really sad that they didn’t adopt my other two in that case. I know they were more of a challenge, but they longed for a home and stability, too.

I suppose the wording in this is confusing for those who don’t know of my history. The ‘baby’ I speak of here was the youngest of three foster children placed with me a little over a decade ago for the purpose of adoption. With domestic adoption, finalization doesn’t come right away. It typically takes 6 months to a year for the paperwork to be put through, and because we had a sibling group of three, they extended that time.

In short, we had the children with us for a total of 35 months. In the end the children were moved, and we had no way of fighting to keep them since they were legally not our children. We did want them. Did want to keep them. Did try to fight for them. Did fail.

That failure is the main trauma in my PTSD, though I had the condition before as a result of childhood abuse.

The foster parents had the children before they were placed with us, during the three months they were taken the first time (we fought and got them back) and from 6 weeks after they were taken the last time. They had the baby straight from the hospital at birth until she was placed with us at just over a year old. We liked them; they were good Christian people – and much, much better with social skills than I could ever possibly be.

In the days since reading updates about her, I have slowly been able to admit to myself that this is possibly a good place for my baby. They are giving her the experiences that I would want her to have – and they actually know how to do these things in order to teach her.

Also, if my baby is sick and dying – as they posts hinted towards – I… it isn’t that I wouldn’t want to be there for her (I ache to have her with me constantly) but… I would blame myself for her illness (I take on the blame of everything even when I couldn’t possibly have caused it) and that would destroy me many times over as losing her has done, and would do again.

Then there is the (questionable) gift that I have of altering reality in my mind. After the shock that lasted for several days I have partially been able to separated ‘her’ baby from ‘my’ baby – so it is hers that is sick, and mine is the same girl I remember in my mind.

Perhaps this isn’t great for my sanity – but in truth, life isn’t good for my sanity. This at least allows me to carry on.

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Autism: Trust and Lies

The challenge was they were going to be there. I wanted to be okay with that; really I did. But I was afraid.

I was afraid something would happen to get my ‘girls’ (chihuahuas) in trouble – like last time – and worried about what they would do. Worried about what she would do.

I was afraid that the forgiveness I had assured myself I had towards the past wasn’t… wasn’t strong enough to be in the same place as them. After all, thoughts of visiting the city where they live (one of my favourite places in the world, though I have only been there twice) brought me to panic. I mean, if we went, they would expect a visit… and could I visit them?

Forgiveness is all well and good in the abstract (notice I am not saying it was easy) but how would it hold up in such a close environment?

And trust? Now, forgiveness is one thing – we all struggle with something, and I know… I know that the failure and shame that I have had in my life wasn’t experienced without a lot of prayer, and study, and energy, and – everything I had really – given to succeed; yet I failed. Do they know that?

I wonder if those looking at my failures actually knew how hard I tried. Frequently it seems they don’t, for they are so angry with me for failing – as if I chose to fail! Really? When I say that I gave everything I had to do well, I actually did give everything I had to do well. So I have to believe that is true of everyone else, too. I have to.

So I forgave them. It wasn’t easy. What they did… what they set into motion… it broke me. Years later I am still broken from it, and I am not certain it can be healed this side of heaven, but… I forgave them.  Over and over again I forgave them – for it seems to me that forgiveness isn’t a one time thing. What was done hurts over and over again. It effects my life over and over again. It comes to mind over and over again.

And every time, I have to forgive again. And I do. I am convinced I do – yet when I am faced with being in the same place as the one who hurt me, I fear it isn’t true.

Trust is even harder. They hurt me once, or twice, or over a period of years, and it was… the worst thing ever. The very worst. And I know they have it in their power to hurt me again, and so I cringe from the contact – for it hurt so very bad the last time. That thing they did? It hurts still. Not a little bit – time doesn’t heal. Time gives perspective. Time lengthens the distance between the waves of pain. But it doesn’t heal it. This still hurts as much today as I think of it than it did then.

I forgave them believing that people fight their hardest to do well – and when we see their failure, we can’t know how hard they tried. But trust is harder for their battle hurt me so much, and I know they have the power to hurt me again.

So as I prepared for my trip, knowing they would be there, the panic grew moment by moment and day by day.

I wrote to my therapist who said, “they can’t take anything away from you but your sleep,” which I know not to be true. They can hurt me again. They can hurt me badly. I cannot lie to myself. I cannot accept other people’s lies – even if they mean well. Even if they are trying to help me find calm. A lie is a lie (whether they know it or not) and it makes the panic worse.

For maybe the worst doesn’t happen to other people (it seems therapists are trained to say our worst fears don’t often happen, and they use that to try to calm people) but my worst fears have happened to me. Again and again. And to tell me that doesn’t happen, or that can’t happen, only makes me feel more alone, misunderstood, and afraid; for the worst does happen to me, so I know it can happen again.

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Autism: To Can or Not To Can

It has been one of my strong interests for a number of years now, and so it makes sense that it comes up again and again – after all, I do seek out information on the subject. Really, not just information, but… everything I can find.

Pictures, books, documentaries, movies… they are some of my all time favourite ways to pass the time; to make me think.

I love to be inspired, and nothing inspires me quite like stories of people who… can.

There is a person in my church who draws comic like pictures based on the sermons each week, and they share them online with the rest of them. The last one I saw was about two different ways of ‘carrying your cross;’ as in, “Whoever wants to be my disciple must deny themselves and take up their cross and follow me.” (Matthew 16:24)

They entitled this picture “the tale of two crosses” or something like that. There was one person, carrying what appeared to be a heavy wooden cross up a hill. The other person was driving an RV filled with lots of ‘stuff.’

I could understand the point – much like my pastor says, “It is dangerous to live (where we live),” because things are easy, and we get… complacent or something. Like the saying, “you don’t know God is all you need until God is all you have.”

In a way I agree with that, only for me, life is more like a battleground than a vacation – though I live in a place where everyone seems to be experiencing life here as if it were some sort of tourist destination. I suppose my experience is much like a soldier returning from particularly brutal experiences at war, and trying to fit in to a society that can’t even imagine what that might be like. I may have never been to war, but my own traumatic experiences have strong, painful, frightening triggers in every day life which affect me in much the same way.

So I appreciate that I live in a land that is not at war – yet I have no trust, and much fear, that this so called peace will last. In fact, I am nearly always on heightened alert that society as we know it is on the brink of collapse – and fully aware in that fear, that I haven’t the skills needed to survive, and most of the people around me are… asleep.

So comforted by the ‘knowledge’ that food comes from the grocery store (and will always be available,) water comes from the taps, heat and power come from automated systems in our homes, and we are basically ‘safe.’

Part of me so longs to be like them. This fear? It is exhausting. And yet the subject captures my thoughts so well that I will spend months of every year, and much of the time in between, watching, researching, considering, planning for this very thing.

For me, I am neither the person carrying the heavy wooden cross, nor the person driving in the RV filled with lots of stuff – for me it feels more like I am carrying the RV filled with ‘stuff.’ It is a burden, and I dream of ‘putting it down.’ For the weight of all of this unnecessary stuff takes so much of my attention that I can’t focus on what is really important.

So I consider: if something happened (and it is very possible that it will to some degree) would I be able to survive?

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We are so dependant on electricity, natural gas, cars, money, grocery stores… most of us have no idea how to survive without them – and I must admit, I really have no clue for all the research I have done. I thrive off ideas, but I couldn’t live off them; for that I need skills.

Through the year I have been taking surveys and such every day to earn money towards gift cards. Finally I had enough to cash in, and want to trade them for something that would be useful now, and would help me to feel confident that I could survive should something happen to change the world as I know it.

And that search led me back to the thought of ‘canning.’ If I used it to buy a pressure canner, and equipment for it – though I have never canned before – would that fit my desire to use both my time and my (gift cards) towards things that would build on the skills I would need to survive; or would it increase the burden of ‘stuff’ that I carry, which takes me away from what is important?

Would I be able to learn to can safely – and would I be able to find enough recipes of the type of food I would use (vegan soups, for instance) to make it worthwhile; or would it be another failure on my part which just takes up more storage space… and if so, what would be a better option?

First world problems? Ye-es, but for one who is always concerned that we are all right on the edge of some disaster that will lead us to being completely dependant on our own skills to be able to survive… but then I think, I couldn’t fight. I couldn’t kill animals for food. I couldn’t defend myself. If it is some type of illness, I wouldn’t likely survive it. So if something does happen – I probably wouldn’t be alive long enough to use any of these skills if I did have them.

Which brings me back to the question: To can, or not to can?

 

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Autism: Please, Not Again!

So we did go camping. I had a lot of anxiety over this through the year as I couldn’t figure out a way (that I could afford) to keep ‘my girls’ safe during the trip – and to keep others safe from them. It isn’t that they are aggressive dogs, but they are defensive, and that often looks the same; for Clara especially.

Clara is my baby. She loves to cuddle. She loves to be held. She curls up in the crook of my arm like a newborn baby as I walk, or rock, or talk to her. She is tiny. She is cute. And maybe, people think, this is why she doesn’t behave well with ‘others’ around. Yet for as long as I have had her, I have never allowed her to jump at people, nip at people, behave in negative ways. She does get in trouble for such things – and she is smart enough to know what I mean; I can see it in her eyes. But she still does it, so I warn people away.

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Clara not wanting to leave ‘bed’ to visit while camping.  July 2017

Clara doesn’t like different. She doesn’t like new. It took me three weeks, and many liver treats to fully win her over. Thirteen months since we got her, my husband still hasn’t made it that far. He can give her treats. He can hold her leash while she is wearing it, maybe. He can be in the same room. He can even talk to her. But that is about as far as it goes. My son doesn’t even get that much. We are happy if she doesn’t bark at him when he comes up the stairs.

Clara is ‘my girl,’ and she has decided that as far as people are concerned, I am enough for her.

Maybe she wasn’t socialized well when she was young (she was nearly 3 years old when I got her, and came from a house with many other dogs.) Maybe something happened before I got her that frightened her (they did try to adopt her to another home before mine, but took her back after 10 days for she wouldn’t come out of the corner where she was hiding.)

Whatever the reason, she doesn’t allow people close to her.

“She might nip,” I tell them. (Please give her space.) So far she hasn’t hurt anyone. She has scared and surprised many when she suddenly lunged at them. I don’t know that she would hurt anyone – but I also am not convinced she wouldn’t. So… please stay away.

I love my girl. She is comforting, and caring, and loving, and absolutely the one I needed to help me through and past – even if I didn’t know that when she first came to me. But she is a one person dog – and (much like myself) it will take more than your confidence that you are ‘good with dogs’ to gain her trust. In fact, nice as you probably are, it is unlikely she will ever give that trust to you.

Molly is much more laid back. Much calmer. But it is rare that Clara will give the chance to get close to her. So Molly likely wouldn’t nip – but Clara would do it for her. Best to leave her alone, too. We are her ‘pack’ I suppose, and she would quite possibly give her life to defend us (all 6.5 lbs of her.)

But she is cute – and that cuteness is almost an overwhelming temptation for dog loving children who don’t understand that not all dogs can be won over by kindness.

Such was the case with my niece’s 4 year old daughter who was up camping the same time we were. We all warned her, but she had no fear. She knew that she wouldn’t hurt ‘anyone,’ and was convinced that she would be able to get Clara to see that. After all, she was able to sit and pet Molly while my husband held Clara’s leash out of reach.

Alas, such was not to be the case.

I was sitting on a camp chair. Clara was on the ground resting. Her leash was wrapped around the arm of the chair to shorten it (there were a lot of people up at the time) and I was holding the end, also wrapped around my hand. The girl came from behind us. We didn’t know she was coming until she was there – but Clara was aware. She barked, and jumped at her before I could pull her back.

Away the girl left, in tears and badly frightened.

I took my girls, and left too; I needed alone time. Perhaps they didn’t see the tears I cried that day, or feel the fear in my heart. Perhaps they didn’t know how badly triggered I was in that moment, or how afraid of what would be done to ‘my girl.’ Perhaps they thought I didn’t care… Or maybe they saw all of it. Maybe they knew what it reminded me of. Maybe they saw me then, too – for that happened only feet away that time so long ago – and yet not long at all.

I talked with her father later that day.

“Has Clara ever nipped you,” he asked me.

“Once when I first got her,” I answered, “but so far it has just been scary, and she hasn’t hurt anyone. I don’t know if…”

“She didn’t hurt her,” he said. “She was just scared.”

But had we been there with another person – the one who was there that other time – the one who… but I can’t talk about that now. Had she been there… had it been her child… it wouldn’t have mattered that Clara “just scared her,” she would have had my dog put down.

My children stolen. My ‘baby’ murdered. I don’t think I could bare it again. I don’t think I could live – no, not even live – through such pain again.

Not again.

 

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Autism: Birthday Triggers

This weekend held the birthdays of both of my (foster) daughters. The eighth of each that I have missed since the adoption failed. For a time I thought I was doing okay this year. On both of the days in question, I spent the majority of the day outside working on my garden. I enjoyed myself.

As I looked closer, however, I realized that I was still triggered – it just looked different from other years.

For the last week or so, I have been experiencing panic attacks. They have been random in that I have had nothing going on to set them off. They have been unpredictable. True, each night as I was trying to fall asleep during this time, I have been panicky – which has kept me awake – but there have also been times during the day where I was fine, and suddenly was panicking (despite being at home and doing something I was enjoying.)

Above that, though I have been in a relatively good mood, all of a sudden I would be overcome with sadness and tears. Like pouring rain out of a sunny sky.

Other years, the days were hard, and my thoughts were ALL about my girls. This year, however, while I did think of them, the thoughts around the sadness were more focused on my dog and grandmother – both of whom died in 2016.

I guess that as time goes by… it isn’t that I’ve forgotten my girls, or even accepted the loss, but… the losses seem to pile in together like a snowball growing larger and larger as it is rolled along the ground. It is all sad, and it all hurts – but when the days come, though the timing is specifically about them, the thoughts are more generalized. I didn’t know that would happen.

So I got through another year – for all four of my children had their birthdays within less than a two month period. It wasn’t as hard, maybe, as I’ve experienced in previous years – but it is far from better.

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Autism: Shouldn’t Have Gone

After several months of exhaustion, I finally had some energy. Every day I got more done, and felt better about the way my life was going. And then…

It rained.

It rained for days, and I felt myself growing more and more hopeless and tired. Try as I might, I could not bring myself past the depression, or regain the hope I had so recently held. For rain? I wondered. And likely that was a lot of it. Certainly it was all I could think of. Until…

I went to life group (Bible Study) and was reminded of what we had talked about in church last week. I guess I had blocked it out. I used to be pretty good at that – or so I thought. I spent years dealing with that very issue. I should have been past it already! At least I thought I was mostly past it.

Sure, there were moments when the memories overwhelmed me, but it isn’t like I think about it all the time. It isn’t like it affects me all the time. I mean, lots of woman have gone through it, right? But most women still live okay. Isn’t the statistic like 1 in 5, or 1 in 3 even? If so many people have experienced it, why should it cause me so much pain?

I dealt with it for years. Most people close to me know about it, it isn’t like I am carrying this big secret alone or anything. Plus I have my faith. So many people don’t even have that.

Forgiveness has been given. The man died long ago. I don’t experience that anymore.

Unlike for most of my teens and early twenties, I am able to close my eyes without having to battle against flashbacks most of the time. They only come when I am talking about it, or thinking about it, or… someone asks about it.

Maybe that is why the week has been so hard. They weren’t talking specifically to me, but I still knew this was my history, too. It made me think about it. It made me remember.

But the week wasn’t so bad. Sure, Sunday at church was hard – but the afternoon was nice, and I spent it outside. I forgot, as I replaced my negative thoughts with plans for my garden. Monday, Tuesday, and Wednesday were alright, too. I had energy, and got a lot done in my house. Thursday it rained, and though I forgot the message, as the time for life group grew nearer, I realized I really didn’t want to go.

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Only, aside from how chilled I felt due to the rainy day, and how much I would have rather spend the evening with my dogs, under my blanket, watching Netflix – there was no good reason I could find not to go. So I went. And then I remembered, and realized it would have been better for me had I stayed at home.

So Friday was really hard. I was so depressed that nothing at all seemed to have any hope. “What is the point,” I thought. “Nothing I do will make any difference anyway.” It rained and rained. It rained so much that a couple of houses not far out of town were flooded, and destroyed by mudslides. (The people were okay, but maybe the pets weren’t.)

Well, the days were rainy, and the days were hard – and I thought it was all about the weather. But perhaps there was more to it than that.

 

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Autism: Vulnerable

There I sat, on the couch, in another person’s house, with a blanket over my legs. Though it was only a few days before, I had blocked out the message – yet when my husband handed me my study sheet, it all came back to me.

It was going to be a difficult night.

The message? Dinah, daughter of Jacob, had been raped and was being held captive. Her brothers tricked the tribe involved into having all of their men circumcised. “While they were still in pain,” they killed them all, and brought Dinah back home.

Hard biblical stories which aren’t found in the children’s bibles. Difficult messages full of pain.

I remember listening on Sunday thinking, “I can relate to this story, yet… I am not struggling with it now.” And I believed that while I was in church. Then I went home, and my mind was flooded with flashbacks, and pain, and all the ways this history still effects me today.

Years later, it still effects so much of how I live and view the world. Right down to pretty much every thought, every emotion, longing, fear, desire… everything about the men around me.

It makes me vulnerable. It reduces me to the state of the child I was silently begging for someone, anyone to rescue me. A child who learned early on that popular opinion on who is and isn’t a good person was fatally flawed, so she could never believe what other people agreed as truth. A child, struggling to trust anyone to protect her – even God. A child who believed there must be something fundamentally wrong with her to cause her father to use her in that way.

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Beneath the Autism that made it hard to speak, confusing to be around people, isolating in my ability to fit in, painful in the overwhelming sensory struggles… Beneath the failures throughout my adult life which shattered whatever confidence I once had that things “have to get better.” Beneath the exhaustion which often overwhelms me so I can barely move. Beneath the hurt of a lifetime of people telling me I was doing things wrong. Beneath it all, there is this – and this affects everything.

I walked out of the church, and noticed several women in tears. It didn’t shock me. I was one of them, yet… for the moment I still felt okay. Until I got home and realized I wasn’t. Not at all.

And there I sat with the paper in my hands, and though I was cold, I was filled head to foot with heat that was shame… I guess it was shame. I couldn’t move. My ability to communicate locked up in my head as it constantly did when I was a child. I couldn’t have spoken if I wanted to; I am not sure I did want to.

What would have been the point?

So I heard what was being said, but all I could do was sit there locked inside my body, hating myself. I couldn’t look at any of them. I couldn’t look away from the study sheet – and though there were only a handful of questions, I spent much of that hour reading them over and over again.

I thought I had mostly gotten past it. What I realized anew this week was that it is still very much a part of me, and likely will be until the day I die.

 

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Autism: Handy Dart

It had been so many months since I sent in the paperwork, that I just assumed I didn’t qualify. “They could have at least written back and let me know,” I thought; and then I forgot about it. Well… not quite forgot, just sort of let it go. So I don’t qualify. I didn’t really expect to anyway. After all, I am not that bad.

For months I stopped talking about it. There was nothing to say. Only that morning I had been talking to my son, and questioning why people don’t respond even just to say, “sorry, we can’t help you.” Just to get some sort of closure. I wasn’t expecting anything much out of the conversation. I had been sick, and still wasn’t thinking well. It is like illness puts a fog on my brain that doesn’t let up for a long time once it is over – and I was still in that fog.

I hadn’t talked to my son for a while, because I had been very sick – so had my husband – and he didn’t want to get sick, too. So he stayed downstairs, and I slept upstairs for a lot of days. I still wasn’t thinking well, but I was getting better, and it was really nice to spend time talking with my son (even though I hardly knew what was being said.)

When he went back downstairs, I checked my email, and had received a message from my therapist letting me know about cheap swim times at the community centre. Knowing that I am not close enough to town to either walk or get a bus (no buses come anywhere close to my house – I would have to walk near an hour to town to catch one) and that my husband takes our only vehicle to work (besides, though I can drive, my anxiety around driving usually keeps me home anyway – especially when I would have to drive to town and back three times in a day to get my husband to and from work, and go do my thing in the middle of the afternoon.)

I am pretty isolated here, though truly we are not that far from town – just 7 minutes driving – but it is 7 minutes of twisty, turny, hilly terrain, which I am not well able to walk.

So months ago, trying to encourage me to get out of the house sometimes, my therapist suggested the “Handy Dart” bus service. It is a service for disabled people who couldn’t manage to catch a regular bus, or get to appointments and such in other ways. For $0.25 more than the regular bus service, this one will pick you up at your home and take you right where you need to go. Then they will pick you up when you are done, and take you home again. Sort of like a cab, only you have to phone and set it up 3 days in advance, including letting them know if anyone else is coming with you (for an extra ticket) and it is a bus, so shared.

Considering it would cost about $20 to get from my house to town in a cab (that is just one way) this is a great deal! Only it is reserved for highly disabled people: cognitive, physical, and sensory.

I am isolated, and I do have severe anxiety. I do get bad motion sickness, especially on buses. I do have bad sensory issues (only I am not sure how the Handy Dart can help with that since there would be other people on the bus, and sometimes other people smell.) At the same time, if there were bus service in my area, I could take the bus (not pleasant, and very anxiety provoking, but I could do it.) If I had another vehicle, I could drive to town. And if I lived closer to town, I could walk or ride my bike to get where I needed. Only none of those options are available to me. So months ago, I filled out the forms for the Handy Dart. My therapist filled out her portion, and my husband brought it in.

Then… nothing. Nothing for months. Of course I didn’t qualify. I am not that disabled.

But my therapist suggested I contact them, and “see if I might qualify.” So I emailed them, because… phones. Less than 5 minutes later, I got a phone call back, “Sorry, I am not sure how this got overlooked. The boxes are all checked, and you are good to go.”

So I did qualify. Right away. No question that I am not disabled enough. Obvious to them that I need this service. So obvious. And I cried in response.

From the moment I first went to my doctor for an Autism diagnosis, I have received nothing from them except the fact that every step of the way it is so obvious to them that I am highly disabled.

  • Yes, you have autism… and OCD, and PTSD, and severe anxiety, and depression, and…
  • Yes, you are struggling too much to be working.
  • Yes, we will put you on medical leave.
  • Yes, you qualify for long term disability, though 60% of applications are rejected.
  • Yes, you qualify for Community Living services, reserved for highly disabled individuals.
  • Yes, you qualify for the Handy Dart service.

I should be thankful, and I am! It is just that… for nearly 40 years I fought so hard to be ‘normal’ and to ‘fit in.’ People never accepted that I belonged, though they were mostly too polite to tell me to go away, yet they always judged me as if… as if I could work hard enough to fit in, and just wasn’t making enough of an effort. And I believed them.

For nearly 40 years I fought, and failed, to be seen as normal, typical, capable… and now at every turn they respond as if to say, “Of course you have Autism.” “Of course you need these services reserved for the most disabled people.” “Of course you couldn’t succeed in that world.”

And I think, “so why did you make me feel for so long that these failures were all my fault?” “Why didn’t you tell me that I wasn’t able to be like you no matter how hard I tried?” “If it is so easy to see, why was I expected to be like everyone else?”

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” – Albert Einstein

That is me. I have spent my whole life believing that I was a failure; that I was stupid; because they tested me in ways that I never could have succeeded. And now I find that this was so obvious to them that there was never a question that I was ‘typical,’ or even could be. So why didn’t they tell me?

And why do I still think that if I fight myself hard enough, I should be able to do what they expected?

90's and earlier 008

 

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