Just a quick note beforehand that this will be spread out over several posts. And I won’t be saying any timeframe of how long will be between each post. The reason behind that is actually partially found in this first share. I will try to improve my writing wherever possible. So, constructive criticism send to me by social media is appreciated. I’m not someone who really writes personal things normally, so this is really new for me…
Extremely often I get asked about my personal life. Which happens to be the thing I like to talk about least of all. While here on my blog I will speak about music and politics many times, I usually do this without references to my personal life. It’s a style a lot of people apparently love, as I have been often credited in both public and private over my style of writing. As some say, a lot of problems in our society are caused by people reflecting on everything based on their personal preferences and ways of living, and I strongly agree with this. Still, it’s time to finally listen to the requests and unveil a bit about my personal life.
I could try and start by explaining an usual day for me, but that’s hard as there’s no usual day for me. Every day is a surprise to me how it actually will be. What I can say is that every day of my life revolves around my children. Which is probably the most misunderstood part of my life at the same time. As I’m a male, my choice of becoming a parent in my teens is one of the aspect of my life that many people condemn. The many times I have heard people say that I would eventually put my children back into the care system and hurt them eternally is one of the reasons why my online activity has been almost non-existent in these past 2 years. As the reality is that this will never happen. Yes, every parent saying that parenting takes up all of your time is right. But if you raise your children right, the love shown by your children far exceeds any feeling you might have about basically having no personal life as parent. Even when your children are going through the worst time, puberty, as is the case for my eldest son. They’re the best part of my life.
In case of all 4 of my children, they have mental health struggles. It’s what I knew during each of the adoptions. And just recently, we had them all rediagnosed again. It’s the reason why I still haven’t updated my about me page. As what we learned is that there is a lot of bad when it comes to mental health diagnosing. And I am saying this while I’ve minored psychology myself.
When I adopted my children, they were all diagnosed with forms of autism spectrum disorders. All 3 of my sons were diagnosed with Heller’s syndrome, while my daughter was diagnosed with the classic autistic disorder, Kanner’s syndrome. Our eldest son was also already diagnosed with several other health and mental health conditions, while our daughter was diagnosed with the same sleeping disorder as I’m diagnosed with, non-24, as well as dyscalculia. Our middle son was recognized with an intellectual disability. Our youngest son was diagnosed with ADHD of the combined type, dyslexia and dyscalculia. And all but our eldest were diagnosed with dyspraxia(developmental coordination disorder).
Also, before moving on, I do want to state something important. Factually speaking, dysgraphia is not stated in the DSM-5. So, before anyone comments, let me explain that dysgraphia refers to specific learning disorder with impairment in written expression. It is 1 of the 3 forms of this disorder, with the other 2 being commonly known as dyslexia, which is with impairment in reading, and dyscalculia, which is with impairment in mathematics.
Before actually getting to the rediagnoses, let me note that we had a lot of trouble of finding a psychologist which would wish to do it. As everywhere we went, we got to hear that when our children had their diagnoses, that’s all there was to it. Seriously, let what I am about to say be an important lesson to any psychologist reading this. As when we finally found a psychologist willing to do the rediagnosing, a lot changed.
Our eldest son got rediagnosed with once more autism spectrum disorder. However, also with ADHD of the predominantly inattentive type. His former diagnosis of dependent personality disorder got scrapped, with the psychologist noting that she really didn’t understand how Vlad was ever diagnosed with this condition. And he also got the additional diagnoses of dyspraxia, dyslexia, dyscalculia and dysgraphia.
Our daughter actually lost her autism spectrum diagnosis. Instead, she got rediagnosed with social pragmatic communication disorder. As the psychologist explained, Kasia misses the behavioural side of autism. She did speculate that Kasia getting misdiagnosed could have to do with social pragmatic communication disorder being a new disorder in the DSM-5. And it’s actually known many with an autism diagnosis are likely misdiagnosed. Her dyspraxia, dyscalculia and non-24 diagnoses remained unchanged.
Both of my youngest 2 sons were referred for genetical testing. For our middle son, fragile X syndrome was discovered. And for our youngest a very rare genetic disorder, which I was requested by him to not share publicly, and therefore won’t do. For both the autism spectrum diagnoses were maintained. For our middle son, Anton, his intellectual disability is now attributed by the fragile X syndrome.
So, all of my children are misdiagnosed, that’s it… Right?
Well, it’s not actually where it stops. At time of writing this, my youngest is 9 years old. And beside of being hyperactive, he was also the only one of my children that needed convincing to go through the tedious process of getting rediagnosed. So, I ended up saying I would let myself get checked out too, which I actually did. And let’s just be honest that it was a clean sweep. I should be glad that I didn’t update my about me page recently, as I still need to do this at the moment I’m writing this.
To be honest, I actually expected to no longer be diagnosed with both selective mutism and autism after being tested once more, but this actually remains unchanged. What did change is the loss of the expressive aphasia diagnosis and the addition of dysgraphia, speech sound disorder and ADHD of the combined type.
It’s actually quite worrisome how much misdiagnoses my family had to deal with. And actually even more how difficult it is to find any psychologist who is willing to redo a diagnosis. If I am really honest, when it comes to mental health problems, having a genetic test done before actually confirming a diagnosis would improve things a lot. There are so many syndromes we know today to be originating from genetic causes. And having them actually diagnosed when you have them, would make life a lot easier. As my family is lucky to have a supportive environment. However, this is often not the case.
Also, daring to diagnose multiple disorders is something important, as this often still doesn’t happen. It’s like motor disorders, like dyspraxia, are often not diagnosed when someone has a condition like autism, as these sort of conditions so often co-morbid. However, take note that we are talking about them both happening at the same time, meaning they should be diagnosed both. Without doing so, children (and adults) often don’t get the support they actually need. It’s really important psychologists finally dare to open their eyes to this.
So, this is for now all. In the next part, I will try to be more personal, sharing stories of things happening in my life these days. Honestly, this already turned out differently than I expected when I first announced I would be trying to write more things about my personal life here on my blog.
Also, just as a side-note, the reason why I can’t say any timeframe for these posts is that I actually have ADHD. I didn’t know this before either. However, I did know that I was really bad at deadlines. Even this post is way later than expected. First it got delayed by my youngest dislocating his shoulder during (association) football practice. And today (which should even by yesterday as I only just notice the time) by just getting distracted every few minutes. Previously I always blamed it on being too messy in my head. But now I actually know the reason. This is actually why I dedicated this first post to the subject. By that probably moving away from the intended idea of writing about my personal life too much.
Again, constructive criticism is appreciated. I probably criticize myself way too much already. But I am literally just writing my thoughts right now. So let me end that here.