Lonely in the herd

Sometimes I feel lonely and wonder if ‘belonging’ is a goal I should pursue. After all a human being is a herd animal. (Which is evident from the amount of people 🐑🐑🐑 that just blindly follow).

Self acceptance

My train of thoughts brought me to ‘being yourself’, what does that actually mean? And is it really as accepted as it seems?

In my process of self-acceptance I have learned what is causing it to be so difficult for me. Saying you’re chronically ill isn’t enough if you only say it once. People forget quickly and generally assume that everyone is just like them. Of course this is not the case, but it’s only remembered in a theoretical sense. What I mean is, they ‘know’ it, but they just don’t think about it. And in the end, of course, their life is not about you. This makes perfect sense but it is also difficult.

I am chronically ill. I have Multiple Sclerosis. And that sucks. Not only because it doesn’t go away, but also because it’s (mostly) invisible. I have MS symptoms every day. Even on good days. But at these times I won’t mention it because I don’t want to complain and it doesn’t help.

Every day I wake up tired and EVERYTHING costs me more energy than it does a healthy person.

In practice, this means that I have to make choices between my activities. So, am I going to a doctor’s appointment or visit someone tonight? Am I going to vacuum, tidy the kitchen or do the groceries? One of these types of activities per day followed by rest is usually doable.

Stress

Because of my neurodivergent brain, many things also cause me extra stress. For example, telephone calls or unexpected changes in my plans. And stress is disastrous for my MS. If I have too much stress in my life, I get physical issues. My legs become weaker, my balance is off, I also develop cognitive problems and become so exhausted that I can’t actually do anything anymore. Sleeping doesn’t help at this time and my energy bucket, which is already miniature in size and leaking anyway, now seems impossible to fill. Resting is all I can do. However, that is a bit of a challenge when you’re also a carer to others.

These are external stressors, but with MS the stress also comes from within my body, due to inflammation in the central nervous system (spinal cord and brain). It is therefore very important that I focus on anti-inflammatory foods as much as possible. This means avoiding dairy, grains, sugar and processed foods.

Doing this solo is quite a challenge. It requires more planning and energy and that is exactly what I do not have in abundance. On top of this, we also have someone in our household with an eating disorder, which makes preparing only one meal for the whole family impossible.

Another cause of stress is known to most of you and that is the stress around your child. That in itself is of course no different for me than any other parent, although added medical conditions and sensory challenges may sometimes make this a little more intense.

After rereading this, it sound like I’m complaining, but really it’s the reality of my life. Maybe it’s all to do with self acceptance and not so much about belonging.

I’m not quite sure which comes first. Is it belonging, self acceptance or being yourself? Can you belong when you are yourself? I know I have (very few) people where I feel all three are possible, but maybe it doesn’t matter. Ultimately, you can’t accept yourself until you know who you are and I haven’t even figured that out yet.

Maybe let’s see who’s under that mask first.

Bachelor’s degree in Obedience Training

So this morning I woke up to a post of someone in one of my fb groups (full of mothers). She stated proudly that she had finished her Bachelor’s degree while working full time, being a mum to 3 special needs children and trying to be an amazing wife to her husband while she was struggling through a burn-out.

For starters, I don’t think there is a question as to WHY she was dealing with a burn-out 😳.

But besides that, is pushing yourself SO hard really that admirable? You only have so many spoons, so if you do all those things, the spoons will be spread thinner.

Great for her if she was trying to follow her dream of course. I’m all for self development, especially for mothers as we tend to forget ourselves easily it seems.

However… when I saw the course she had been doing, my heart bled for her, but more so for her children.

Applied Science in Psychology in Applied Behavior Analysis. And her plan is to continue studying and pass the exam to become a Board Certified assistant Behavior Analyst. That’s all we need, more ABA people 😡.

Reading her post had my brain going mad. I’ve decided that 1. she herself could not possibly autistic, 2. has no idea what damage ABA caused in autistic people, 3. has never talked (or more importantly listened) to an autistic person about her course.

I would love to let her know my thoughts, was it not for the humongous risk of being attacked by all the other mothers who have been applauding her for achieving her goal. I don’t think I can deal with that kind of negativity right now. Then again, not standing up is ignoring the issue.

Or I could possibly just pm her the following picture and link:

https://the-art-of-autism.com/damage-over-generations-quotes-by-major-influencers-in-autism/

I am disabled!

‘Honey… I am disabled’

‘You’re ok’

‘But I’m still disabled’

‘I know, honey’

Somehow, it suddenly hit me. I am disabled! There I was, lying in my bed in the middle of the night. I had been asleep and dreaming about this no doubt, but now of course I was wide awake and the brain cogs were turning like mad.

I know that, as an autistic person, I’ve learned to mask very early on, to try and fit in. And I think I became quite good at it. I have pretended my ass off to present as neurotypical. A quirky one, most likely, but not ‘alarming’ to neurotypicals, so I must have been pretty good.

Downside of this was that on the way I’ve lost the best part of me and even people who (thought they) knew me very well had no idea that I struggled a bunch on a daily basis. I’ve also hid behind other people’s skills, to try and avoid extra anxiety but still get whatever it was done. Even though this wasn’t always a conscious decision.

An example of this is when years ago my husband and I were walking around town and a young German speaking girl, probably about 12 years old or so, asked us the way. Keep in mind that I, as a Dutch person, have had German lessons in school and my husband has not. It would be most logical that I would help her out. But I couldn’t! I had all the right words in my head. Actually so clearly that I could almost hear them myself, but I lost the ability to talk at that time. My husband however did what he could to talk to the girl in his (as he called it) pigeon German and using the few Dutch words and lots of hand gestures. And I was just standing there, temporarily mute.

That is definitely a disability right there. I now know that this isn’t uncommon in autistic people, but I can tell you, when this happens it makes you feel extremely inadequate.

While I was lying in my bed, having all these thoughts I also thought about my MS. Most people have heard of MS. However some people still confuse it with a muscle/mobility issue which it is not correct. So for clarity:

Multiple sclerosis (MS) is an autoimmune disease. It is a chronic disease where the immune system mistakenly attacks healthy cells in the myelin, the protective sheath that surrounds nerves in the brain and spinal cord. Damage to the myelin sheath interrupts nerve signals from the brain to other parts of the body.

It is highly unpredictable and affects people differently. Some of the most common symptoms include:

• fatigue
• vision problems
• numbness and tingling
• muscle spasms, stiffness and weakness
• mobility problems
• pain
• problems with thinking, learning and planning
• depression and anxiety
• sexual problems
• bladder problems
• bowel problems
• speech and swallowing difficulties

Quite a few of these symptoms I have or had (and therefore might come back during a flare up. You can also see that a lot of these are invisible symptoms, like fatigue, which is a huge one. The amount of times I’ve heard, ‘yes I’m also very tired’ are countless. Being very tired is not the same as being (MS) fatigued. People start to see the difference a little bit now that there’s more awareness of Long Covid, but I don’t even know if that is the same. But fatigue does look to the outside as ‘tired’, so comments like ‘ maybe you should go to bed early or have a nap’ are common. And saying no to this advice looks like you’re just stubborn or don’t want to be better. However, MS fatigue is not necessarily helped by sleep. I can wake up after a night’s sleep and be as fatigued as when I went to sleep. The comments and lack of understanding have kept me from talking to people about me being fatigued.

But in terms of other invisible symptoms, also problems with thinking, learning and planning is a big one. And because MS is so unpredictable it is a really hard one to deal with.

I know that if I’m under any kind of stress, my MS symptoms show and/or become worse. And with ‘any kind of stress’ I mean physical stress (raised body temperature, flu, inflammation etc.), but especially emotional stress. Emotional stress for me also includes stress that I feel through others. Luckily I have learned to distance myself emotionally from people outside of my direct family better than I used to, but if one of my kids is feeling very stressed, then this can and likely will have an affect on my physical well being.

When dealing with invisible symptoms, that are not understood, it feels easier to hide them. The same way as not going anywhere when my legs temporarily wobble in stead of using crutches or a wheelchair (I can’t even think about that! 😱) And this works to a certain extent, but if you then realize that when you keep doing this it affects your health and your overall well being, you know it’s not an option.

However, that means that you have to admit to having these symptoms and potentially having to face explaining your disability at the risk of not being believed and/or taken seriously. And that thought fills me with lots of anxiety!

Maybe it’s because of my own preconceptions about disabled people. Maybe this is why I do not want to be seen as a disabled person. Maybe I am part of the group of people who actually have this toxic preconception that disabled people are worth less. I don’t see myself as one of these people, but maybe this thought is somewhere in my brain. Or I’m just afraid that people will think of me that way – worth less. Or maybe it’s because I’ve spent all my life to strive for perfectionism and don’t feel disability has a place in that. I really don’t know, but I do know (now) that nobody is perfect and that trying to ignore the fact that I am indeed disabled is possibly the biggest flaw I could have.

Love the diversity

Am I the only person who cringes when reading or hearing the words ‘early intervention’?

Early intervention; It seems to be the most common approach (i.e. treatment) when a young child gets an autism diagnosis.

This morning I read a question online from a neurotypical mother of an autistic child asking for the best intervention for her son, because since he started school this year he had been behaving inappropriately. He had stopped talking, been screaming and banging his head etc. But only in school. At home he was a happy and cooperative child.

To me, it’s clear that the child in question is very stressed in this school environment. I would think that it’s the school, not the child that is the issue here. But (to me) she was clearly looking to change something in the child’s behaviour to make it easier for the school to deal with, hence the question for intervention.

Early intervention: A treatment for autism. 😱

Autism doesn’t require treatment. It requires support. Unfortunately it’s labeled as a disorder, but what it really is, is a difference from the norm. Just like homosexuality used to be labeled as an illness. It’s simply NOT the correct!

And as it isn’t an illness or a disorder, it can’t nor does it need to be fixed and/or cured. Autistic people want just what everybody else wants: have the space to be their authentic selves. If you don’t understand what that means, then that’s ok. You don’t need to.

If you are a decent human being, you just have to be kind and respectful and stop assuming you understand and/or know better. Just like you do with anyone else (I hope).

Stop the prejudice.

Love the diversity. 🌈

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https://en.m.wikipedia.org/wiki/Neurodiversity: “Neurodiversity advocates denounce the framing of neurodevelopmental disorders as requiring medical intervention to “cure” or “fix” them, and instead promote support systems such as inclusion-focused services, accommodations, communication and assistive technologies, occupational training, and independent living support. The intention is for individuals to receive support that honours authentic forms of human diversity, self-expression, and being, rather than treatment which coerces or forces them to adopt normative ideas of normality, or to conform to a clinical ideal.”

To sleep or not to sleep…

Today our youngest and I had planned to meet up with a couple of home ed families, to fill up our social buckets. The plan was that he could play some video games with the other teenagers and I would have chats with their mums. We were both very much looking forward to this.

We’re still very much working on recreating a network of friends here in Ireland and because of my medical issues we had to cancel a few meet ups already. Luckily I’m back being active again now, so we had our first teen meet up last Saturday. Which was great.

Today we had been invited to meet up again, but this morning I was asked to cancel it. My son is struggling with sleep issues, which makes that his sleep shifts his day and night. We already know that melatonin is a common issue in autistic people but this feels like a circadian rhythm issue.

Of course we’ve tried everything that is usually advised to make kids have a good night sleep, good sleep hygiene, winding down, soft lights, no screens before bed, we kept a schedule waking him up at the same time every morning, we even tried giving him melatonin, but nothing really works for him. When we tried, the only difference was that now he had turned into a very grumpy sleep deprived little person, which then affected his food intake and ability to concentrate.

Because of this and the fact that he is not in a system (like school) where he had no choice but get up at a particular time in the morning, we decided that the most important thing was that he got enough sleep. No matter what time of day this was going to be. We saw that this worked. At least now he slept enough.

However, this does mean that there are challenges with appointments that we make. He has some control, but that’s only control about being awake. And that doesn’t mean he can sleep more later, which of course deprives him of sleep all over again and/or makes the day-night shift even more messed up.

It’s complicated.

For example: yesterday, he only woke up at about 5pm, so he’s been awake all through the night. He came to me this morning at about 8.30am asking me to cancel our meeting this afternoon because he felt he could push himself to stay awake until the afternoon. He really needed to sleep. He clearly felt really bad about it, but this is not a choice. We wish it was. He had been really looking forward to meeting up with his new friends, but he’s just not able to.

Fortunately, his friends are very supportive. And we will be invited again.

I am autistic and that’s fine.

It was when we had the second autism diagnosis in our family that I started to seriously wonder if maybe I could also be autistic. This was about 8 years ago now. I recognized a lot of our children’s characteristics, that were now labeled as autistic traits, in me.

I started doing more research online and had various chats with autistic adults, who seemed not surprised in the slightest by me wondering about myself being autistic. I now understand that to autistic people it might have been quite obvious.

Some of the things I recognized specifically was how hard I always find it to make friends. I always waited for someone else to reach out to me and that then followed by me potentially overdoing it and claiming them. I recognize now that this is a sign of my social skills not being neurotypical. I find it hard because I realize that whenever people say something, they might mean something else. It might not be meant literal and if I do take it that way, I’d be wrong. I’ve realised that when this happens, I am being laughed at, so I’ve learned to mask and turn it around as if I meant to make this ‘joke’ and all is good with the world again. You don’t have to explain anything and people just take it as funny. Nothing more and nothing less. This works for me in the moment, but doesn’t make me any wiser.

I clearly do not communicate the same way as neurotypical people. I’d like to believe that I don’t care about that, but I don’t think that’s quite true. Like everyone else, I’d like to belong and I do like to be liked. So I mask.

I’ve also created, quite early on, an image for myself that acts like a protective shield. In the past I’ve been described as someone who did their own thing and didn’t care about what others thought. This was SO not the case. I was desperately trying to fit in and sometimes it got too much. I wasn’t very good at regulating my emotions and would come across and very catty sometimes. Catty because I didn’t know how else to communicate my strong feelings. Feelings that weren’t understood, I felt.

So I tried to adjust to what others deemed acceptable. From a very young age I’ve been observing others and I’ve been learning to copy their behaviour. Subconsciously I took this as ‘normal’ or ‘the right way to behave’, so that I could fit in.

It annoys me that I’m still doing it, because now I know that somewhere along the line I lost myself. I now find it quite hard to reclaim ‘me’ again, because who am I? Where is the little girl who was genuine in her expression.

I guess I’ve always had some sort of outlet in my art, a place where I can be truly myself. However that only works if I’m not looking at other people’s work and I don’t hear any opinions before I’m finished, because then I jump straight into ‘I must not do it right’ and get back to ‘normal’ art. This is not me. I like the unique weirdness. The stuff that nobody would come up with.

I even have this with responding to people. Even on social media, when I feel some post require a compliment or a congratulations, I simply cannot respond with something that’s been said before. When I do, I feel like I’m copying and therefore the other person might think I’m insincere. This is never (!) the case because if I didn’t mean to respond, I wouldn’t.

Another point is probably that I find it quite hard to keep my chats (or blogposts for that matter) small and/or to the point. It just cannot be done. Not effectively anyway.

This makes me come back to what I wanted to say. After two of our kids were diagnosed with autism, I decided I wanted to find out about myself. So I started the ball rolling and this was a very slow ball I have to say… but eventually I got to see a psychologist for an initial assessment. We met and I was asked loads of questions. In the end he said that the second and official assessment would require another waiting list (we’re talking years here!) and if I’d be still interested to go ahead with it as it wouldn’t change anything. A bit odd I thought, because what would have made me lose interest? Anyway, I was put on the next waiting list. Before I left I asked him if he thought that I might be autistic.

His answer: I’d be very surprised if the assessment would show that you weren’t autistic.

After this, we’ve moved house and I would have to start the whole lot again, because I moved out of their area. So I left it there.

Way later I read that a lot of autistic adults do actually self diagnose and that an official diagnosis is only deemed necessary if it helps with getting support services. But for me, I’m good. I know enough. And even though, I have felt like a fraud for a while, I can now honestly say that there’s no doubt:

I am autistic. And that’s just fine.