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Autism: To Dream Again

This morning was “The Summit” church service at the wharf – were once a year all three campuses and five services of our church get together for church, worship, and lunch after.

It rained a lot yesterday – which is kind of a big deal since we had a drought all summer with only half an hour of rain in about 2.5 months. Today was sunny and the skies were clear (which also hasn’t happened for much of the summer.) It was a nice day for outdoor church.

While I was there I once again noted something that surprised me. I was watching the parents with young children, and the older children at the awkward stage, and was surprised once more to acknowledge that I don’t want children.

Stressful, exhausting, difficult…

It is a foreign concept to me to not want children. Until a little over a year ago, even after years of infertility and a traumatic failed adoption, having children of my own was the main desire of my heart – even though I did have, and raise, and still have, my now adult son.

I would see other parents with their children and felt… envy, and sadness, and… lost, alone, forgotten. Other people had families – why couldn’t I?

It was another, and a major, characteristic that separated me from them – and I hated that separation. I still hate it, maybe, but at least I can see what I couldn’t see then: Children are overwhelming.

Beautiful, and fun, and worth the effort? Yes – but…

Children call attention to their parents. Always. You see the children, you see the parents – and there is advice, and there is judgement, and there is a lot of stress that comes with the job.

And I can’t be watched.

As I sat watching the parents dealing with the children I remembered that. I can’t be watched, and children call attention to their parents. Always.

I can’t be watched, for when I am watched I operate from a different part of my brain which significantly drops my functioning level to the point where I pretty much always fail. So having children – no matter how much I wanted them and loved them (and I did) – was a recipe for failure. There was no way beyond it for I can’t function when I am watched, and parents are always being watched.

As I began to accept this revelation – which has come to me in the past, but I always fought against (“if I could only try harder, or do things different, or research more, or… maybe I could” – but no, I can’t function when I am watched, and whatever else a parent faces in raising a child, they are always watched – and if they don’t want to be watched, there must be something really wrong with them, and they shouldn’t be trusted with their children to begin with; right?)

As I began to accept this revelation I began to realize that if it weren’t for the memory of the trauma of losing ‘my’ children, and without the fixation of a lifetime of wanting children (possibly because that, in my eyes, was the measure of success and ‘normalcy’ – to be a ‘good parent’) I might even be able to admit that I am happier and calmer with my life as it is now.

The traumas are there, and they do cause me to struggle a lot of the time – but this thought that I could live okay without children… it is mind blowing. It is to turn completely in the other direction, and accept that it might be possible to dream again.

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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: Wet Gloves

The idea was that I would go and and wash dishes while my tea was cooling, and then take my tea, and my girls outside, where we would enjoy the evening as we did most nights while my mom was here. I have to be able to make plans like this, and when those plans are disturbed, it affects me strongly.

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Affects me? Effects me? Whatever. The problem was wet gloves.

It may not seem like such a big deal to those who don’t understand, but for me to be able to wash my dishes, I have to use gloves. Dry gloves. For without gloves, or with gloves that water has gotten into, my hands literally feel like they are burning the entire time I am doing dishes, and for long after – like sticking my hands into acid, burning.

It is one of my major sensory issues – and one I work around by using gloves.

Well, it wasn’t my turn to cook yesterday, so I had to leave the kitchen for someone else to use (a very difficult thing in itself for me – and the only reason I go along with it is that when other people are here, I get paralyzed, and really struggle to make the meals at all.)

The meal that was made, was not something I would have made – and not one I like much as it is (though to be fair, most meals made here are not for me, since I am plant based, and the others aren’t.) In fact, this meal was one that only the person making it likes, and likes a lot. But it was messy, and used a lot of dishes, and… ended with water all over the counter, which got into my gloves, and brought me to tears as I set my tea down, and picked my gloves up to start on the dishes.

And suddenly everything was overwhelming, which brought me to a very teary meltdown.

Flipping rubber gloves inside out to dry the inside is not an easy thing to do, and not a fast thing to do, and I was very upset about my plans being altered (my necessary plans to get through the dishes which were overwhelming me to begin with.) As I was trying to flip them inside out, and they weren’t flipping well, I got frustrated, and cried out in that frustration as I shook the glove in the air to try and force the fingers out.

“What is going on?” he asked me.

“Someone put something wet on my gloves, and now they are wet inside,” I answered.

“Do you want a new pair,” he asked.

“This is my new pair,” I responded.

“Well, I am very sorry,” he told me.

Great. But do you understand? Do you know why this is so horrible for me? Can you even imagine? My tea is getting cold, and my girls are waiting for me, and I have all these horribly dirty dishes from a meal I didn’t even want that I have to wash by myself, and my hands are going to burn, and my mom is gone, and my children were taken, and…

Your response is telling me that you feel good about forgiving me for being so upset at something you did – and still you leave me to continue this activity that is now going to feel like I had my hands soaking in acid, or bleach because you didn’t think about my gloves being there on the counter (not even that close to the sink, and folded over to avoid getting water in them).

And I will be the one left with the shame of another thing that tells me I don’t deserve to be loved, and everything that goes wrong is my fault – even when it is something you did that hurt me.

And I just want to shout – “Don’t you think that maybe, this time, you are the one needing forgiveness?” And forgive you, I will – but please stop making me feel like I am horrible, and you are merciful, when you do something that causes me pain, and I feel the pain from it – how is that yours to forgive?

I realize it wasn’t done to hurt me. I realize that when you put the dishes there, or cut the vegetables there, or did whatever you did that got the inside of my gloves wet – it was more that the thought of the gloves getting wet never crossed your mind, than that you did it to hurt me, but…

I can also say that, though I have hurt many people in my life, and though sometimes that was a direct consequence of something I did – I never did it to hurt them, either.

I may fail more often than others, and I may hurt people more often than others (it seems my very presence often causes people more pain than they would have had without me) but I don’t think that should bring us to the point where I should apologize when you hurt me.

And I just want you to understand that things that might not seem like much to you, can cause huge amounts of pain and distress for me – and I am not wrong, or unreasonable to feel it.

 

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Autism: Time Distorted

A sound interrupts my sleep: a cat meowing, a cupboard being opened, the flushing of a toilet. I turn over, and am instantly pounced by squiggling, wiggling balls of fur. Right up in my face… ‘are you up, Mom?’ Time to get up. Typically it takes an hour for me to properly wake up and get out of bed, no matter how long I have slept. These girls depend on me however. They need to be fed, and they need to go outside, and so up I get.

Rubbing my eyes I go to the washroom and brush my teeth. Despite the rush, my routine must be followed. The cats are waiting for me in the kitchen. I pull out four bowls: two get wet cat food, canned; two get homemade dog food, warmed in the microwave (they aren’t quite thawed from the night before.)

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My girls eat fast, and look longingly at the cat bowls. My feline friends eat slower, daintily. I take the girls outside, and hope the cats are done by the time we come in, for Clara and Molly will not be deterred. They dive for the bowls the moment we come in, before I have a chance to get my boots off.

Grabbing my breakfast, I head towards the living room, turn on my computer, and sit down. The moment I do, two little girls leap into my lap – I have learned to be prepared. They lie down, in their favourite place, and fall back to sleep. Sometimes Ditch joins us, sometimes he doesn’t. While on the Internet, I head to Swagbucks to attempt a survey. I have made about $100 since September (5 months ago.) I used to make that in a day at my old job, and wonder if there are better ways to earn money.

Turning to the news, I quickly check to see what is happening in the world before continuing on to my emails. Several are deleted without opening them, and I am left with maybe 5 or 6 each morning that I am interested in. After reading them, I head towards Facebook, and quickly skim through the feed of ‘nothing’ posts to check that everyone is well. Of course, not everyone shows up in my feed. Instead I get several stories from groups I never asked to follow, and multiple shared posts coming mostly from the same sources.

It takes too long to go through it all, and I start to get irritated by the time I reach the last of the posts I read yesterday. By this time I am feeling overwhelmed, so I play Facebook games (Candy Crush and Farm Heroes Saga) to try and calm down. More often than not the level I am on annoys me further. My son asks me why I keep playing, and I wonder the same myself, but I am compulsive – and I have gotten so far. If only I could just make it to the end, but they keep making more levels.

Often it is already close to 10am by this point, though my girls get me up around 7:30. I realize it is not a great use of time, but when I don’t follow through my routine, I feel it heavily, and it makes the rest of my day harder to get through. Time to go outside again. At this time of year, they don’t stay out long. I guess the routine will change once spring comes.

The next few hours either go to laundry and cleaning, or to my fixations (Pinterest, the Realtor website, online research…) I need to have my days of fixations, or I am unable to function at all on cleaning days, and not able to visit when it comes time to go out. I need many hours free for this on an almost daily basis, or I will fall apart… even with this, I frequently get overwhelmed.

In the middle of my ‘free’ time, I have to get lunch for myself and my girls, and take them out again. It is hard to pull myself away.

Mid-afternoon is time for my girls to get their walk. In the hot days of summer, this will have to change. I think of that constantly. For now, though, it is the best time for us to go. Part way through the walk, they get cold feet, or something scares them. They won’t walk any further, and I have to pick them up and carry them home. Clara frequently asks for ‘up’ by the time we reach the end of our (not particularly long) driveway.

At home again, I go into my exercise routine (twenty minutes on the elliptical machine while watching a documentary on Netflix – cast to my TV on Chromecast) followed by a time practising my keyboard. From there, I check my email again, which reminds me it is time to practise Spanish on Duolingo. I had a really hard time getting back to me after my last visit with my Psychiatrist, when she dismissed the things I do as part of my routine, and told me I should look into work, or volunteering, or going to school… everything I was doing to improve myself became harder after that.

Suddenly it is time to make supper, and feed my girls, followed by an evening watching Netflix videos and writing in my journal. The day has felt really busy. When I have more to do: Go to church or Bible Study, or even go out to a hockey game, or to watch a play – I have to brace myself. One ‘extra’ event (including appointments) can feel overwhelming.

I consider again my Psychiatrist’s advice to find work, or volunteer, or go to school – and it overwhelms me. I become anxious, and shut down, and my routine is broken. How could I possibly find the time? I remember when I was working, though it was only part time, I wasn’t able to accomplish most of the above. My house stayed messy, I didn’t exercise or try to learn anything… any attempt at routine was met with failure. I just couldn’t do it, and I felt anxious, overwhelmed, and irritated just about all the time.

My sense of time is distorted, I think. It seems to take me longer to do just about anything, and I need a lot more time than others seem to in between each activity in order to recuperate. For that reason, though it likely seems to others (who are able to work full time, keep their house, study, research, enjoy a hobby, or otherwise improve themselves – and still find time for church, other activities, and time with friends) that my life is very slow – I actually still feel very busy, and am overwhelmed by that busyness much of the time.

 

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Autism: Should Have Learned

Today I went back to edit a post I had written a couple of days ago. Thankfully it hadn’t been released yet. Thankfully I had the time (and wisdom) to really think about it before the information was shared. I had even written about how years ago, when we had our `foster` children, I had shared too much in the emails between myself and the ministry (as well as between myself and an online special needs support group I had been a member of.)

I have a tendency to share too much information – it is difficult for me to understand that not everything needs to be shared, even if I know that to be true.

It is difficult for me to leave out details, for how do I know at which point the omission becomes a lie? How do I know what points of what I am sharing are helpful to other people, or what parts I would be condemned for leaving out?

Since people tend to misunderstand what I am saying, doesn’t it make sense that the more details I share, the clearer my message should be? Yet when I share everything, it seems that people misunderstand me more – as if I am sharing all of this information to hide something else, when in fact I am sharing all this information to try to ensure that all information is shared.

They even try to “read between the lines,” when for me, there is nothing between the lines – maybe that is why they seem to respond better to me when I say very little, for then there is nothing more to look for… I really don’t understand it.

I do know that other people don’t share everything – I just don’t know how I could do that for myself. It feels… manipulative and dishonest.

Yet the information that I edited out of my old post were specific details on what behaviours my children were struggling with the summer before our adoption failure – and I realized as I thought about that how it might be hurtful to my children (who still live in this community, though I don’t see them) if those details were shared.

I wrote, when I had my children, because I was trying to get other people to understand, and because I was looking for (unique) suggestions of how we might help our children better. Instead, I apparently overwhelmed those I was writing too, who believed (unfairly) that I was being negative about my children, and really wished we hadn’t tried to adopt them (untrue.) So they ‘helped’ based on how they interpreted my emails, which really was completely off the mark.

I write now because for so many years I felt alone, and as if everything about me was wrong. Then I found out I had Autism (or more specifically, Asperger’s) and thought that by writing this blog, I might help other people to not feel so alone, or that everything was wrong with them, or…

I write to help – but I still share too much, and I wonder… will all of this be taken wrong, too? In trying to reach out, am I actually isolating myself further? I really don’t know the answer to these questions, for as I said, I really don’t understand.

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Autism: Judged and Frustrated

The thing was, I was starting to feel good. It might not have seemed like much to other people, but had anyone been familiar with how my thoughts have been fixated for the past… thirty years, really, they would know that this has probably been the biggest breakthrough of my life.

Sure people respond as if to say that when a dream doesn’t work out, accept it and move on – and I admit that might be good advice; but it is not me. Believe me, I have tried to let this one go. Especially since the loss of my children, I have tried to let it go. What good has it done me anyway? It has only led me on a path of failure and pain.

Yet for all the reality of it, I still wanted to be able to have children. I still ached for this. I still wanted it bad enough to dream of horrible circumstances I could find myself in that would allow this… fixation to become a reality. I knew this was bad for me, bad for my marriage, bad for my relationship with my son – but I letting go of this demand in my heart and mind for children,which drowned out anything that might have been a blessing to replace it, was impossible.

I had my son, and I ran my daycare, and I had children in my life for a time – and then it was over; and I still wanted them. The adoption fell through, and it more than broke my heart; it traumatized me. I am still living with the trauma of that. I was left broken, and I was given my Pomeranian, and I loved him. So I got up, and I tried to live again in the world where I not only didn’t belong, but where others – by look, action, or word – told me over and over I didn’t belong (and it was my fault.)

And I failed.

I still had my dog, and I loved him. I enjoyed my time with him – yet still felt that something, in the form of children, was missing from my life. Then he died, and my heart broke again, and the trauma and fear grew.

So I was given another dog. The pain was still overwhelming, yet she brought me joy. I love that she is tiny (6.5lbs) and follows me everywhere, and wants near constant attention. She filled a place in my heart that has been aching to be filled for decades, and I found contentment with her. I was happy enough that when her previous owners asked me if I would take her mother, too, my initial answer leaned towards ‘no.’ (So very unlike me for this type of thing.)

Yet happily, after months of consideration, I decided to take her. Now I have ‘my girls,’ and I have felt so content with them that it… doesn’t replace, but instead answers my desire for children. A better blessing for a person like me.

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So I went into the doctor’s office feeling thankful for this contentment that was the end of a 30 year battle that others rarely understood the depth of – and she was disappointed in me, and wanting to give up on me, because I wasn’t visiting people more, and I was still so anxious over work.

She wanted me to contact a couple of places about work and behaviour therapy for people with Autism – and I did… yet what I got from them was more of the same: judgment and disappointment that I wasn’t healed enough to allow them to help me work (after all, that should be the goal of every adult, yes?)

Okay, so I am not ready to go back into their world. I wonder if they had experienced what I have lived through if they would be able… but then the success stories they keep talking to me about (as if that should be my goal) is for people who hadn’t been able to go to college – then did, or hadn’t been able to find work – then did… they forget that when it comes to me, I am on the other side of this: I have been to college, I have worked, I have gone out there and tried – and I failed so bad that over and over the trauma grew.

I don’t need to “go out there” to find that I can do it – I need to be healed from my time “out there” because I couldn’t do it.

Besides that, they miss the point. They are looking for some huge goal that looks normal to them, and missing the huge battle that has just been won: I can’t have children, and I am finally okay with that. I was feeling good about that, and was met with judgment and disappointment…

Another small moment in their world… just a short time… and by their look, words, and actions I hear that I don’t belong – and I never will. Another failure. Another failure that says I can’t, and they get frustrated with me when they tell me I can, and I don’t believe them.

 

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Autism: Don’t Think She Hears Me

Before I left the house, I felt okay. A little anxious, but not bad considering I had an appointment to keep. The roads, though the snow came several days ago, were still kind of bad. Sanded, but still covered in snow, and slippery in spots. I drove carefully, and still the breaking system did its ‘thing’ at one point on the way down.

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Though the parking lot was nearly empty, I parked across the street. I had one bad experience about 18 months ago, and have used the overflow parking ever since. I was nervous walking across the street; worried about slipping; worried about cars; concerned with how tired I was feeling.

I walked down the steps, stomped my boots to get the snow off, walked through the door, and announced myself at reception. I was early. I always am, but I wasn’t as early as usual, for I didn’t want to leave my dogs, and so left the house later than I often would. I sat in the waiting room, and waited.

The waiting room was empty, except for me. I sat at the back, but after several minutes chose to move to a seat by the door, in order to read a poster about ‘bats.’ Bats interest me. I like to watch them while I am camping, swooping down and around to catch insects in the air. I couldn’t see it well enough to read from my original seat, and wondered if more bats in the area might have rabies. I read this morning that a fox in Alberta tested positive for rabies; should I be concerned?

But the poster only talked about how to properly dispose of dead bats, or how to get one out of your house if it gets caught inside, or the fact that sometimes scratch marks from the claws are so small they can’t always be detected… I continued to wait. 1:00 passed, and still I wasn’t called in. At 1:05, I saw my doctor pass. She must have been out to lunch. Shortly after, I was called in… she didn’t even come to get me as she always did before, but just told the receptionist to “send her down.”

The first question is always hard, but you know, I don’t think she really hears me anyway: “How are you?” “I don’t know, okay I guess,” I said quietly. “That is good,” she responded. She doesn’t hear me, I think. Not really.

Why do they ask that if they don’t want anything but the standard answer of “fine”? How many people going in to see the doctor, or in this case psychiatrist, are actually fine? Would I be there if I was? Of course I am not fine. Can we please just get on with the appointment?

So she asked what I had been doing in the six months since our last appointment: I got two dogs. They make me happy. My son researched, and saved, bought the parts, and built his own computer; I am proud of him. I have been writing, and learning Spanish, and a bit of Latin. I have been going to church and Life Group, and have been visiting a friend every other week or so. Anxious, and nauseous, and very tired… “Okay, I guess.”

Of course, I didn’t say all of this at once, but over the course of nearly half an hour. Still…

Her focus was on getting me to leave the house (even to volunteer, if I was afraid of losing my disability) and to communicate more, and to not be afraid of phones, and public bathrooms, and… because if I did, it would “teach my son that these things were okay.”

“But I did work, and I did go to school, and I did get honours, and I did spend most of his life working or going to school save for the last 18 months; and I failed, and it made no difference to him at all.”

“So what you are saying is that you can work, but you don’t want to,” she responded.

No!” I nearly shouted (in my very quiet way,) “that is not what I am saying at all!”

“What were you saying then,” she asked me.

“When I went to work, or school, my anxiety was so severe, I couldn’t function,” I said (this is why she took me off work, but she doesn’t seem to remember anything about me between appointments) “I could hold on for a short time – maybe three months to a year, or so – but then I would fall apart. I would fail.” (and the failure would accumulate, and the anxiety would grow.) “My anxiety doesn’t get better with time, it gets so much worse.”

She looked at me like everyone else who doesn’t get it. “If you tried, you could do this,” her look said; but I did try. Over and over after failures that would cripple or kill other people I kept trying, and I kept failing, and my anxiety grew. “If you won’t try, I can’t help you,” is what I heard as she said she wouldn’t book more appointments, but I “could call” if I were in a crisis or something (Um, no I can’t – phones, remember? But of course she didn’t, even though I had mentioned that inability several times in that 30 minute appointment.)

I went in feeling not to bad, but I left and came home in tears. I really, really don’t think she hears me. No different from all the other people who judge, but really have no clue.

Only she was supposed to be different, for she was the one I went to for help.

 

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