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Need to get "official" diagnosis

Posted: Thu Sep 08, 2016 8:24 pm
by SansaBaby
Ok, I'm new here *waves* hi. This is a bit of a strange one.

I'm a 24 year old woman, who lives in the UK. I'm married and have a young daughter. I've known for awhile I was different and while in high school the SENCO suggested I may have either Autism or Dyspraxia/Dyslexia unfortunately my dad (who I now have no contact with) decided he didn't want me officially diagnosed and so I struggled on.

I was bullied throughout school for various things (I'll talk about this later). I always thought I had Autism as I know a lot of the traits can be similar, although I wasn't classic "autisitic" I just assumed I was undiagnosed. I tried to get a diagnoses before I fell pregnant a few years ago but my GP assured me I was not autistic. I continued to feel different to my friends and the man who is now my husband.

I stumbled upon the Dypraxia Foundation a few months ago through a friend who has a Dyspraxia diagnosis, and both my husband and I feel this maybe a more appropriate diagnosis for me. I am using this post and this forum to gather my thoughts with a view to going for a diagnosis. I will say, my husband is a lovely man, although I may not make him sound like one below. We joke and laugh about my symptoms and possible diagnosis as a way of coping. He in no way would laugh/insult/upset deliberately anyone with a diagnosis or who suspected they were dyspraxic.

I am happy for comments to be made if people feel this is the wrong diagnosis/place for me or for comments on anything about my post in general.

- Poor Balance - I really struggle with walking, I cannot walk in a straight line. My daughters young enough to still need a pushchair, and although I find it easier to walk when pushing the pushchair, I do struggle to push it up hills, even a slight gradient I find I'm arms outstretched head down pushing as hard as I can. My husband makes a joke of this, but I'm actually pretty embarrassed.

- Poor Posture and Fatigue - My husband says I complain if I stand up for too long, and I do feel tired if I'm walking or standing for long periods. I am asthmatic and put it down to that but realised I can't stand still for ages, I pace when on the phone or when holding my daughter, then sit down for ages afterwards as I feel tired.

- Poor Hand eye co-ordination - I do have eye problems due to a squint in my right eye which affects my periferal vision, and I wear glasses. But I cannot catch anything and I'm prone to not "recieving" objects when they're given to me, so they end up on the floor, it's almost like I misjudge where the object is and it gets dropped.

I've struggled with learning to drive, I just can't seem to be able to look everywhere I need to. I gave up as I felt it was too hard.

- Clumsy Gait and Movement - My husband says I walk very "clumisly", I drag my feet and "plod" in his word. He says it appears walking takes a lot of effort even though I'm not 93!

I frequently (at least 2-3 times a day) walk into door frames/handles and furniture even if it's been there all the time I've known the place it's in. I'm often covered in bruises from tripping over rugs/tables/thin air. If I run I flap my arms like I'm trying to take off.

- Manual Dexterity - I cannot wash up; if I hold a plate in one hand and a sponge in another my hands feel heavy so I do the bare minimum before putting the plate on the drainer, I often miss specks of food. I also struggle with ironing in similar vain. Although I enjoy both tasks.

- Manipulative Skills and Grasp - I hold my pen/pencil in a fist sort of grip so my handwriting is wonky, I write a lot of words to a line and I write so small. My arm gets tired. My signature never looks the same, and it can cause problems with using my bank cards and cheques due to this.

I struggle with putting keys into a lock, I have to try multiple times before I get it right. I struggle to turn keys in locks and have been locked out before. I have a fear of being locked out, particularly if my daughters inside the house.

- Talking continuously and repeating self - I talk A LOT. My husband switches off because I say the same thing over and over and over again. I get fixated on a topic and talk about it. I try to fill silences with talk. I also struggle with volume; I am often speaking loudly without realising it. I have trouble pronouncing some words e.g. I pronounce specific as pacific and am often tempted to write or type it that way. I avoid saying certain words as I don't like how they feel when I say them "moist" being a good one. Even without interruption I frequently forget what I am saying and pause or stutter for sometimes a few minutes trying to remember, if I can describe it a different way I do e.g. if I forget the word "bike" i might say "ride it outside" and the listener has to guess what I'm trying to say, but if I can't describe it I'll often say I've forgotten halting the conversation.

- Tracking - If i'm reading, after a few minutes I will lose track of where I'm reading and then lose the flow of the story.

- Sensitive to noise - I can't be watching TV and listening if my daughters crying at the same time. I have to pause/mute the TV then listen. I am often "jumpy" so if I'm concerntrating on something and someone walks into or out of the room it can make me jump. The cat meowing when I'm not doing anything can make me jump too.

- Sensitive to touch - I don't like people in my personal space unless I've invited them (husband/daughter excluded as I trust and know them) I hate being hugged or touched particularly if I haven't known the person long or I've met them again after a period of time away from them.

- Sensitive to Temperature and Pain - I am either too hot or too cold, never just right. Pain seems to last ages, a blister for example can be painful for 3-4 days after the initial injury.

- Lack of Awareness and Space - I frequently trip over the cat, over my daughter, over thin air. I bump into things (see Clumsy and Gait above), I stub my toes daily. I bang my head several times a week.

- Little sense of time - I am either very early or late for things. By early I'm usually 30mins or so early as I hate being late. If I'm likely to be late I often will just not turn up due to being embarrassed.

When cooking I often misjudge timings and either under cook or burn food (I've burnt pasta before now) my husband does most of the cooking so I don't injury myself, make myself ill or worse.

- Poor Sense of Direction - I have to have L and R written on my hands when I know I'm going to use right or left. I frequently get mine and my daughters shoes the wrong way round (my daughters 14mnths old and she knows which shoe goes on which foot :( ). If you ask me which way is north on a map or compass then I'd turn it round until you told me because I just don't know. My husband uses up, down, left and right instead when we're using them.

- Poor Short Memory - You can ask me something and 2 minutes later I've forgotten you asked me. I frequently put my phone/keys/purse down and forget where they are, even if I use a regular place I put them I still forget where that place is. I will make lists of things to do/buy etc and forget to check my list. I often forget appointments. My new iphone has helped with this as it reminds me, but before I was all over the place. I still forget to put things in my phone so forget what I'm supposed to be doing. I've lost friendships because of my forgetfulness. I forget names unless I use them regularly.

- Unfocused and Erratic - I get distracted when trying to tidy things by anything; music playing, texts/phonecalls etc. I am ashamed of the fact my flat is an absolute tip, but every time I try and tidy I just make the mess worse. This is the thing my husband finds most annoying, as my side of our bed is piled high with clothes and used tissues. I worry about where to put things, so just put things anywhere, particularly in other peoples houses and spaces.

I have depression, so have good and bad days. But on my bad days I can buy things that I don't need just because i deserve them in my head.

- Difficultly in following instructions - I need to be told to do things step-by-step, if you bombard me with everything at once I get confused and can't follow often making the situation worse.

- Difficulty concentrating - I watch TV for 10mins then do something else, because I struggle to concentrate. Then end up unable to follow what's going on anyway. Similarly with reading above.

- Slow to finish a task - I know I get distracted easily, I will often put things off until the very last minute as I know I then don't have time to daydream/faff about with my phone.

- Difficulty listening to people - I inturpt a lot according to my husband, I cut across him. I can lose whats going on in a conversation if theres more than 2 people taking part.

- Slow to adapt to new situations - I try to avoid going to places I've never been before. I feel uncomfortable when around people I've never met before. When planning my wedding I did everything via email as I hate using phones. I struggle with tone of voice, and can't use a jokey/lighthearted tone myself.

- Impulsive - I am very impatient, and do not wait for anything if it's something I want or feel I should have. I've gotten better since my daughter was born but I am still impulsive when buying things. I love the feeling I get when I buy things that I want such as clothes. Often feel I deserve a reward for minor achievements.

- Tend to get stress, depressed and anxious - I am a worrier. I was once told if I had nothing to worry about I'd worry about that. I get worried about my daughter when comparing her to her peers despite her having difficulties and known delays. I get upset easily and worry that I've upset people when I've not said or done anything. I panic if someone criticizes me and will sometimes leave situations I am finding difficult or stressful.

- Diffiuclty sleeping - My mind races as I try to fall asleep and I worry about everything and everyone I care about.

- Low Self-Esteem - I'm not good at anything, I'm not talented, I'm not creative, I'm not a good mum. If someone praises or compliments me I can get worried they're saying it just for the sake of saying something.

These are the symptoms I think I match and how I feel I match them.

Re: Need to get "official" diagnosis

Posted: Thu Sep 08, 2016 10:15 pm
by SansaBaby
More thoughts:

Jewellery - I wanted a pandora bracelet so badly as a teenager but now I have one I don't wear it. I also don't wear earrings despite having pierced ears (thanks mum for doing them when I was younger than my daughter it now!). I can feel things that don't feel right on me, bracelets slip and slide down my arm which is horrible, earrings brush and bash against my face which I don't like, studs feel heavy and uncomfortable.

My wedding ring is the only jewellery I wear (engagement ring before that) I can always feel I'm wearing it, my finger feels heavy. If I take it off my finger feels cold and drafty neither feels right. I want to wear it because I'm married and proud but don't because it's heavy.

Similarly I can always feel and see my glasses. They make my nose heavy. I can see without them but struggle to focus, but it feels odd not wearing them.

Touch - there's only one person I allow to cut my hair, and she usually only does it every 6-8 months. She's a family friend trained hair dresser but it takes me ages to get used to a new look hence why I don't get it cut often.

Fears - I'm scared of losing my daughter if I get a diagnosis. I may not be the richest or the best mum in the world but I try my best and I do love her more than anything in the world. I'm scared she'll be like me, and I don't want that either. I'm scared my husband will leave me when I need him more than anything. I'm scared because I desperately want another child but don't think I can cope with what that will mean organisation wise with clubs and schedules and different personalities.

Re: Need to get "official" diagnosis

Posted: Fri Sep 09, 2016 9:01 pm
by Tom fod
Hi SansaBaby

First of all, Welcome to our forum. I really feel for you as I cannot imagine this post was easy to write and I can see that you're frightened about potential outcomes from asking for help and this being misinterpreted or dismissed in some way.

I hope we can inspire you to go out and seek help to make your home and family life a little easier. Getting a dyspraxia diagnosis as an adult can be difficult so you will more than likely need to be persistent and open and honest to possible solutions offered as any healthcare professionals will probably look at helping you with specific areas rather than the more holistic and immediate action approach you are probably hoping for. I think it is quite possible your GP might refer you to a neurologist in the first instance. i'm not a qualified expert, by any measure, but I feel it would also be very much worthwhile asking for a referral to an occupational therapist and some form of counselling too.

Have you shared what you have posted with your husband and would he and/or another friend/family member be prepared to go to your GP with you, to broach this. Try to think about what solutions might be out there to help you with day to day activities, (a whiteboard in the kitchen to help with reminders (to add to phone as reminders) some sort of power assist motor for your daughter's buggy, a dishwasher, simple things to help relieve some of the pressures difficulties you face. I realise income may be a concern here but in many cases low cost solutions can be found and don't need to be 'gold plated'. try to break tasks down as much as possible and try not to panic if you have to step away from one task if necessity draws you away. There are so many things vying for attention these days and as you know it can really make one's head spin. The important thing is you love your husband and daughter and are doing the best you can. There are people who want to help and whose vocation it is, to do so.

Quite a few of us were left to muddle along as best we could as in many ways people were more inclined to be afraid of what being given a label (be that autistic, dyspraxic whatever) might mean, due to associated stigma etc. Sadly these attitudes persist in some quarters and can often make things far more difficult/complex than they are/need to be.

Please feel free to question or challenge anything in my response and I hope the site is useful/supportive

Have you contacted the Dyspraxia Foundation's helpline ... f=1&t=4524 and were they able to offer any useful advice or support?

Re: Need to get "official" diagnosis

Posted: Fri Sep 16, 2016 10:44 pm
by katherine100
Hi Sansababy,

I wanted to say hello as I am a mum with a baby girl too and I too suspect I have dyspraxia but I have not had an assessment. So it's nice to see someone on here who might understand the challenges of motherhood with dyspraxia (or suspected dyspraxia).

I can relate to a lot of what you put in your post. I don't have some of the physical challenges you do (must be very hard!) but I can identify with a lot of the organisational and social difficulties you've had.

I was also bullied at school for being that bit different (well quite a lot different if I'm honest!). I went to boarding school from when I was 9 too which was hell on earth for me.

I also struggled to learn to drive. I managed to get an automatic license in the end but I'm still really bad at some manoeuvres and parking. I also hate to cook. The kitchen just seems to attack me!

My husband also teases me for my lack of coordination and does impressions of my run! I don't mind too much though as I know he loves and respects me really.

I too am very sensitive to touch and noise. I can't stand the feel of velvet (even thinking about it makes me shudder!). Continued loud noises really distress me (and used to cause me to really flip out as a child) and I struggle to concentrate on anything with any kind of background noise - which is unfortunate as I'm a teacher but I've learnt to manage (just!) over the years.

My time keeping is abysmal. I'm late everywhere! Never early like you though. You do well getting places early even if you are very early. I used to be like you and not go to a lot of things because I was late and embarrassed to go in. Now I make myself tough it out and I tell myself, "It really is better to be late than never so get in there!". I genuinely try so hard to be on time places so I don't beat myself up about it too much if I'm a bit late these days. I just count it as a positive if I attend things at all because it does take bravery not to walk away sometimes.

I have always struggled with being messy (although I'm getting a bit better these days!) and with losing things (I must lose my keys at least 3 times each time I try to leave the house with my daughter!).

I could go on. I identify with a lot of what you said. You are not alone in experiencing these challenges although it does sound like you could have more pronounced difficulties than I do. If so I really feel for you as I know how hard life has been for me with possibly lesser challenges.

Anyway you mustn't be so down on yourself. Someone must think you're great, as you're married (and a successful relationship is a real achievement I think!). Also you must have had to be very resilient so you should be proud of yourself for that. Plus you write well, clearly explaining your difficulties, so you are very articulate too.