Dyspraxia?

A place to talk about your experience of living with Dyspraxia

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Lilydog82
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Dyspraxia?

Post by Lilydog82 »

Hello I’m new here.
Not really sure how to start my question? So
I’ll write a short statement type thing to try explain best

So as a child I was unable to do tasks that children my age could do, walked late, tying shoelaces, buttons on my clothes. I didn’t learn to ride a bicycle until the age of 15
Even then I was constantly falling off of it.
The only issue I didn’t have was poverty of speech in fact I was talking from a very young age and people often tell me I’m speaking too much , out to turn and perhaps somewhat at a pace others cannot keep up with. My long term memory is photographic. Short term terrible.
School psychologist in the 80s told my parents I’d have problems but didn’t define anything as such.
2008 incorrectly diagnosed with schizophrenia which has since been replaced with some sort of spectrum disorder and co morbidities such as anxiety and ocd and hyperactivity. Because the considerations of psychosis were indeed misdiagnosed by my inability to fully explain the issues I were experiencing at the time and now have since been reviewed.
The doctors ran a great deal of blood tests and have looked at every option in regards to things that relate to co ordination and also balance and movement. I have difficulties in processing how close I am to something when walking so often bang into things and people I feel like a pin ball machine with my movement. My immediate worry was it was ataxia. However I do not present with that gait and such like.
I do not have any difficulties with written word however I certain do in terms of taking things a bit literally when speaking to people on a vocal level. I struggle. Well I say struggle. I simply do not do maths or anything relating to that sort of thing but then I can remember extreme lengths of numbers and combinations.
So now all the tests have been done. Ie to see if there was an organic origin for how I am and have always been and there is not, they have given me an occupational therapist who is due to visit me at my house next week. I’m a bit worried as I’m not sure what to expect from
This. I also had to fill in a adult sensory profile which has been scored. I do not know the result yet.
Is this the normal process for diagnosis of something like dyspraxia?
So to summarise
Spatial awareness terrible
Difficulties in dressing
Movement. I often feel if I’m not moving fast I’m going to fall. If that makes sense. I have had many accidents.
I find accompanying these issues I also suffer from
Sleep problems , hyperactivity, concentration issues , and the anxiety derived from the problems with movement. I’m also incredibly hypersensitive to noise and touch.
I have good days and bad days if that is right ? Typically days where things are going right and are correct to a routine i adhere to I find the mobility and other issues slightly more manageable. On days where things are “off” then the aforementioned issues are heightened.
Sorry for the long post. Trying to condense is difficult.
So is it indeed the occupational therapist and the sensory profile I had to do indicative of a theory that this may indeed be dyspraxia along with the spectrum disorder they are implying i have. In some ways I do and do not wish this to be the case. Because if it were the case that would clearly be upsetting but on the flip side it would explain why I suffer and have suffered with the difficulties I have my whole life.
So much for my short post summarising. Sorry. Thank you for reading.
Lilydog82
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Re: Dyspraxia?

Post by Lilydog82 »

Further more
I do not have a dominant hand if that makes any sense? Both are fairly equal.
Despite this I cannot wear anything white due to the mess I make when eating or drinking.
So is it indeed the occupational therapist who made me do a sensory test and who is visiting me at home next week likely to be the diagnoser if that is a word ?
Tom fod
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Re: Dyspraxia?

Post by Tom fod »

Hi Lily and welcome

You definitely have some Neurodivergent /Dyspraxic traits. I hope your visit from the OT is productive. OT's usually cannot confirm Dyspraxia on their own and but can provide an opinion and will hopefully be able to suggest next steps to help. Dyspraxia is not something that is always easy to assess as most of the tests are geared towards children and as adults we develop coping and masking strategies. These are good/bad. I can relate to all the things you've mentioned . When my day goes to plan I generally cope well but nightmare days hit me harder than others and probably a good deal of that can be my own uncompromising expectations of myself. A guess it's a bit of a misguided coping/defence strategy that caused me quite a lot of pain and still can though I'm generally kinder and forgiving of myself.
Tom
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With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
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Lilydog82
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Re: Dyspraxia?

Post by Lilydog82 »

Hi thanks for replying
What is neurodivergent traits? Sorry for my ignorance
Typically when I wake at the right time Ie to my routine I’m fine for most of the day and then as the day progresses I literally feel like I’m bouncing around when I’m walking. I wouldn’t say I have a particular gait that would suggest anything other than something like dyspraxia.
Though having said that I do feel that if my arms aren’t well I wouldn’t say balancing but sorry I don’t know how to explain it. Let’s just say my arms are like my boat ore at times.
As it progresses I do typically find it heightens my anxiety as I’ve not been given an official diagnosis yet there is always that worry that it may be something else not that to say dyspraxia is a better diagnosis but it would certainly explain a lot.
Sorry feeling a bit fast at the moment that’s the best way I can describe it. When I did my sensory test and gave it back I pondered over what it was saying, the questions and wondering how they score it. The scoring was based on some symbol system which I couldn’t understand so I wasn’t able to build up a picture myself as per the results prior to handing it back in.
As a child the doctors and psychologists back in the 1980s said I’d have issues in life but my parents can’t quite remember exactly what else they said. As aforementioned I didn’t have any problems with speech. Just everything else was delayed, catching a ball, dressing myself, riding a bicycle etc and don’t even get me started on maths. That is impossible. Sorry I’m going over old ground I’ve already mentioned. Doesn’t help my OT is on holiday this week so I’ve got to wait until next week to see her in person. Unfortunately my bad traits are being impatient. Anyway very great full for your response
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Re: Dyspraxia?

Post by Tom fod »

Lilydog82 wrote: Wed Jun 09, 2021 12:25 pm Hi thanks for replying

What is neurodivergent traits? Sorry for my ignorance

Typically when I wake at the right time Ie to my routine I’m fine for most of the day and then as the day progresses I literally feel like I’m bouncing around when I’m walking. I wouldn’t say I have a particular gait that would suggest anything other than something like dyspraxia.
Though having said that I do feel that if my arms aren’t well I wouldn’t say balancing but sorry I don’t know how to explain it. Let’s just say my arms are like my boat ore at times.

As it progresses I do typically find it heightens my anxiety as I’ve not been given an official diagnosis yet there is always that worry that it may be something else not that to say dyspraxia is a better diagnosis but it would certainly explain a lot.
Sorry feeling a bit fast at the moment that’s the best way I can describe it. When I did my sensory test and gave it back I pondered over what it was saying, the questions and wondering how they score it. The scoring was based on some symbol system which I couldn’t understand so I wasn’t able to build up a picture myself as per the results prior to handing it back in.

As a child the doctors and psychologists back in the 1980s said I’d have issues in life but my parents can’t quite remember exactly what else they said. As aforementioned I didn’t have any problems with speech. Just everything else was delayed, catching a ball, dressing myself, riding a bicycle etc and don’t even get me started on maths. That is impossible. Sorry I’m going over old ground I’ve already mentioned. Doesn’t help my OT is on holiday this week so I’ve got to wait until next week to see her in person. Unfortunately my bad traits are being impatient. Anyway very great full for your response
Lily

You're welcome. Not ignorant at all I've had 10 years on the forum here and numerous interactions with others in the community. It's hard to get your head around and just when you think you know . .

Neurodivergent traits are things we do that the average person might see as a bit strange (Normal People Scare Me!). It's a bit of a catch-all term given that traits of ADHD, Dyspraxia, Dyslexia, Dyscalculia Autistic Spectrum Condition typically all overlap. Is it dyspraxiness or just my general weirdness?All this makes identifying which diagnosis labels to assign to any one person pretty difficult. We are all quite enigmatic and not to be pigeon-holed - in my humble opinion that is! Any label is for you to better understand yourself, not for other people to then make assumptions about what you can or cannot do well, just because you have had a particular label assigned to, or foisted upon you.

I can relate with not quite knowing what to do with my arms/hands when walking (or very rare) running. It is not easy to describe our traits as it tends to get us into a "Why is everything I do so weird!" frame of mind and the guilt/unhappiness can cloud our thoughts and tongue-tie us. The higher the emotion the more difficult it is. In some senses we need to 'fail' the test spectacularly to be confirmed dyspraxic with absolutely no doubt on the part of whoever assesses us (as if!). That way we can start down the road of learning to accept and be in 'harmony' or reasonably content with our dyspraxic selves. Uncertainty and or having to wait for answers that aren't immediately apparent tends to trigger my own inner anxiety (OK Anxieties).

I can't catch, don't drive (a little too visually impaired to learn), often look like I've been dragged through a hedge backwards catch myself on door frames and furniture and can seemingly trip over fresh air. I live in an untidy and disorganised 'warzone' I can generally cope ok on some arithmetic but start introducing more complex mathematical concepts and I'm very quickly lost. You don't have to tick all the boxes, just enough of them and in some areas you may have developed perfectly adequate coping stategies which work most of the time. Throw in time pressure/being hurried, tired or just down and these coping strategies can soon start to unravel. All sounding a little familiar? :evilb:
Last edited by Tom fod on Wed Jun 09, 2021 7:27 pm, edited 1 time in total.
Tom
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With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
(from Peter and the Test Tube Babies, Foot Full of Bullets)
Lilydog82
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Re: Dyspraxia?

Post by Lilydog82 »

Hey yes sounds very familiar. Funny you should say about catching yourself in doors. Everyday despite knowing where the door handles and knobs are I still at least three times a day manage to get my jumper pockets or trouser pockets snagged in the handles as I pass them by.
Today isn’t a good day for me. I usually wake at 6:30am but today it was 4:54 am.
So I expect today won’t go as planned. Unfortunately I live with family. I say unfortunately not in a bad way towards them. It’s just they’re less respective of my routine than I’d like. For example waking this early will throw my bowels off. Sorry to be descriptive. I’ve always had IBS but I stick to a strict diet and sleep schedule, anyway a family member was up and about at that particular time which woke me , despite being on sedatives, any tiny noise will wake me. I’m pretty hypersensitive to all senses especially sound. So I can tell this is going to be a bad day. I mean to anticipate that it’ll be bad isn’t a good thing I suppose. I should take it as it comes. But for me routine is paramount and since I know it’s off I know it’s going to annoy me.
Usually I’d have my shower by half seven am after being awake by half six am. But today i had to shower at six am.
I have noise cancellation headphones but can’t really wear them to bed as it would be uncomfortable. Do you find any of this for yourself as well?
Yes I’d say my bedroom and table next to me is pretty
Much a war zone looking thing but I know where everything is even in my chaos pile of stuff. It tends to be the kitchen I make most of my well, mess if you like. Everything is a little slap dash as I don’t like doing things slowly. I feel if I can get things done quickly I can go back to my chair and relax. On a side note these things were more evident as a child and also now. Previously I subdued the issues with alcohol to which I no longer touch. Because back when I drank alcohol I felt somewhat numbed so things were more tolerable. Now I’m winging it as I go. But it’s difficult
Lilydog82
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Re: Dyspraxia?

Post by Lilydog82 »

Quick update.
As suspected because my routine has been shot and I woke far too early, the issues I face are much worse today than days where my routine is as per my requirements.
I am resigned to my seat for now as the motor issues are worse today than they normally are.
Tom fod
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Re: Dyspraxia?

Post by Tom fod »

When things don't go to plan it definitely is wearing. I'm fortunate to be relatively mildly affected and generally manage ok.A lot of people I know live with various and/or numerous other difficulties. It's all too common to compare ourselves to others and feel doubly wretched.

Well done for beating the alcohol! It's all too easy a trap to fall into.
Tom
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With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
(from Peter and the Test Tube Babies, Foot Full of Bullets)
Lilydog82
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Re: Dyspraxia?

Post by Lilydog82 »

Hey how are you doing this weekend
My day started fairly well and was going to plan and as the day progressed, I find increasingly more things that aren’t going to my schedule. Despite not working/employed , I still have a very particular routine to my day.
I reflected today on life, from childhood to now, trying to figure things out while getting slowly sun burnt in the garden but that is irrelevant.
So all the way up to mid to late twenties i struggled with the issues I now indeed face too.
During the space between I sought out various means to desensitise. Be that various prescriptions or alcohol.
Now I am sober and have been for some time, I can connect the dots and see the behavioural and movement issues I faced prior to attempting to blunt my feelings
Being sober, I have no crutch. I do recall during my time of silliness that I quit alcohol briefly back then and the issues I face now appeared. I then returned to alcohol and the sensation of being somewhat over vigilant to every sense was again muted. I’m not suggesting I will return to alcohol as that’s not a place I’d like to return to. But certainly in reflection, the world for me has certainly returned back to the overly bright, loud and out of sync that it were before my issue with trying to dumb these sensations down.
I recall worrying I had given myself ataxia, however a doctor and another doctor confirmed this indeed wasn’t the case and simply put that this situation is “just the way I am”, without much explanation otherwise. Of course I indeed have a psychiatrist but as I do not fit a particular criteria that they’d treat I am kind of left to my own devices. It has been done so now that I receive assistance from the Occupational therapist as I previously mentioned, to which I should hear from this week in regards to meeting me in person to discuss my sensory profile and situation surrounding that and to also discuss dyspraxia.
For me in a roundabout way a diagnosis of this would be in someways a relief in a morbid sense. As the mind can certainly wander. The mind can especially wander when you have particular bad days and there creates further problems as the mobility issue increases as the day progresses with the worries of nonsensical ideas I have created with the help of Dr Google, an all too easy wormhole to fall into when you’re trying to explain the every sensation you experience.
I have had every blood test and exam possible to explain things. And while I know I have type two diabetes and ibs something to which I’ve suffered all my life. The other issues I face are considered trivial.
So here is hoping this week ahead I can make progress with the correct people. It would be nice to be able to leave the house without people thinking I’m either drunk or whatever. I have also noted that the doctors when writing me emails put “ “ or ( ) between keywords. I didn’t understand this at first. But i am now aware I take things too literally.
Long post. Sorry. I just needed to get it off my chest.
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Re: Dyspraxia?

Post by Tom fod »

Hi Lily

Not too bad thanks. Thursday was a bit dicey as things felt out of control workwise. Friday was better and have booked myself some holiday to recharge. The emotional impact/burden is such that I'm sure quite a few may turn to alcohol or prescription medication or illicit substances to try to numb the anxiety/frustration

I think mine was diagnosed/identified as part of the Statement of Special Educational Need though I can't ever recall my parents or teachers ever trying to explain it so I always thought I was visually impaired and stupid/useless. It was only in my 30s that I learned. In some ways the revelation was a relief and it explained a lot. However, the question of who I'd need to inform and what other people would think wasn't at all easy to wrestle with at that time.

I believe anyone identified as being Dyspraxic/having Dyspraxia needs someone they can talk to about what it all means for them, how to tell others (if they choose to), what help there is and what they can do to adjust to living with the condition. Probably a course of counselling (CBT and/or Mindfulness) with a therapist who has worked with other dyspraxics and at least knows something about the condition and the effect it can have on peoples' emotional wellbeing.

While it is a neurological condition it's not something that is picked up in bloods or imaging of the brain. There needs to be some level clinical investigation/input to rule out other causes for difficulty. In many cases it's not something Neurologists working with adults have much time for as it's nothing they can operate on or prescribe medication for. In a lot of cases identification may come from educational psychologists and/or an OT. There are a lot of individuals (Robert Dore was one) out there preying on people's/parent's desperation/guilt offering programmes of diet/exercise with bold claims about cures. There is little if any regulation.

While it might seem trivial to others, it is very relative to the person living with the condition and their own experiences/journey. It's good to get it out of our head and onto paper or a screen so that we can then try to make some sort of sense of it for ourselves and gain perspective, rather than being at war with ourselves and our feelings. I don't think enough is known about whether there is a direct or indirect relationship with things like ME, Fibro Myalgia, DDS, IBS and other conditions such as Generalised Anxiety and other mental health conditions that come and/or are typically within the realms pf Psychiatry.
Tom
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With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
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Lilydog82
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Re: Dyspraxia?

Post by Lilydog82 »

Hi glad you had a good weekend.
It certainly is in retrospect for me during the periods where I numbed myself , much easier to deal with than now. I’m not saying I’d ever go down that path again.
Yes I mean I’ve had many blood tests , blood pressure all the usual stuff. Had a MRI back in 2008.
It is only now I’m being offered support via a Occupational therapist. I’m some what inpatient. When I know I’m going to be receiving something or something is due. I typically want it straight away. It’s a terrible habit. Some what pedantic about times.
I’d certainly say there exists other co morbidities with a dyspraxia type leaning. Such as GAD/OCD and such.
I believe these are through frustrations and an inability to explain to someone else just how you’re feeling with them understanding? Especially people that have known you a long time. Ie parents. Who have seen the behaviours and mannerisms etc but simply say it’s just how you are and there-lies the issue that treatment isn’t properly addressed in many cases when the issues are present from a very young age. I suppose we live in a different time now when things are better diagnosed. So, people of another generation who have gone through the mill haven’t properly been treated or managed. At least that’s how I feel in my case. Anyway enough of the doom and gloom. I’ve only had three accidents today.
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Re: Dyspraxia?

Post by Tom fod »

Lilydog82 wrote: Sun Jun 13, 2021 4:30 pm Hi glad you had a good weekend.
It certainly is in retrospect for me during the periods where I numbed myself , much easier to deal with than now. I’m not saying I’d ever go down that path again.
Yes I mean I’ve had many blood tests , blood pressure all the usual stuff. Had a MRI back in 2008.
It is only now I’m being offered support via a Occupational therapist. I’m some what inpatient. When I know I’m going to be receiving something or something is due. I typically want it straight away. It’s a terrible habit. Some what pedantic about times.
I’d certainly say there exists other co morbidities with a dyspraxia type leaning. Such as GAD/OCD and such.
I believe these are through frustrations and an inability to explain to someone else just how you’re feeling with them understanding? Especially people that have known you a long time. Ie parents. Who have seen the behaviours and mannerisms etc but simply say it’s just how you are and there-lies the issue that treatment isn’t properly addressed in many cases when the issues are present from a very young age. I suppose we live in a different time now when things are better diagnosed. So, people of another generation who have gone through the mill haven’t properly been treated or managed. At least that’s how I feel in my case. Anyway enough of the doom and gloom. I’ve only had three accidents today.
I think because it so often interferes with our sense of certainty and control we try to compensate but in a chaotic world that isn't always possible and usually unrealistic. The strain this puts on us possibly contributes to/exacerbates other conditions that might exist side by side. It's a nebulous conditition and difficult to convey to those who are unaffected and unable (sometimes unwilling) to understand. The traits are often things lots of people experience so it can be easily dismissed or you get lazy responses like you're lazy or you need to pay attention apply yourself. These lapses for some are the rule more than the exception

To many it is probably downright Heresy but I feel a touch ill at ease with 'diagnosis'. If society could be a bit more accepting and accommodating of the fact people are not all the same and can value difference and diversity, the world could be a better place for everyone. Of course, our sense of humour and resilience can wear thin/take a battering with the umpteenth Dyspraxident or setback. As big picture thinkers we so often see the whole of a situation and all the ins and outs and we can all too soon find ourselves in overwhelm and paralysed/haunted by bitter/traumatic past experience!
Tom
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With a foot full of bullets I tried to run faster but I just hobbled on to the next disaster.
(from Peter and the Test Tube Babies, Foot Full of Bullets)
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