Steph's Story

Need help? Feel that you're the only one? Here is all the information you need to survive being a teenager with Dyspraxia!

Steph's Story

Postby parnassus » Mon Nov 12, 2007 5:41 pm

Hi. For those who don't know me, I'm Stephanie but I prefer to be called Steph.I'm 21 years old and I have Aspergers Syndrome (an autistic spectrum disorder) and dyspraxia, both of which, in hindsight, were obvious from birth. My birth was oxytocin induced (a drug that used to be given to expectant mothers to induce labour or speed it up but is now banned for that purpose, apparantly, as it was discovered that, in a lot of children, it caused behavioural difficulties and a tendency towards allergies). It wasn't to blame for my difficulties though, as far as I know.

When I was just minutes old, my mother suspected I was blind as I wouldn't focus on her eyes or show any response to her face (both of which are autistic symptoms in infancy) but they gave me a light test and discovered that, even though I was slow to track the light, I was doing it eventually so they concluded that there was nothing wrong with my vision and that I was probably just sleepy! I was born at 2 pm and my mother tried to feed me that first afternoon but I wouldn't feed-she was worried that I would be waking her up during the night for a feed. I went off to the ward baby room and slept through all night-in the morning, my mum went to see me and was surprised that I hadn't woken up all night-I ended up not waking up till 10 30 and not feeding until about a hour later!

When my parents took me home, my mother said that I was an unusually quiet and passive baby who rarely cried which pleased her as my brother, who is 19 months older than me, was a typical boy and very loud and hyper so she was pleased that I didn't demand attention at all! It was also noted that I was very floppy (chronic hypotonia or low muscle tone is a huge component of my dyspraxia) and didn't care who held me which is unusual as most babies prefer to be held only by their mother or father.

I was not very playful and often had to be forced to eat as I never felt hungry or demanded food! Then, when I was 5 months old, I almost suffered a cot death-my parents were at a party with some friends and I was in a room upstairs in my crib. My mother realised that I hadn't fed for a while so went upstairs to feed me and she couldn't wake me up-she shook me to wake me up and my eyes were rolling in my head-I don't know if this incident had any consequences on my brain development or not but I did seem to be even less alert than normal following this incident.
There was also an incident 2 months later when my brother and I were playing and he elbowed me to the floor where I hit the back of my head sharply on the concrete floor! Around this time, my parents noticed that, when they put me down on a chair or something, I would literally stay there for hours not making a sound-I was more like a doll than a child.

I was also late to achieve milestones particularly those which involved motor skills, such as crawling, walking and sitting/standing unsupported. I also wasn't speaking, not even babbling or making the "mama", "dada" sounds. When I was 2 years and 10 months old, my mother took me to our GP because I was still completely mute-she was told that I was probably just a slow developer and that she just wasn't used to parenting girls. Interestingly, the same doctor said years later, after my Aspergers diagnosis, that my mother was right and she should have listened to her all those years ago as parents instincts are usually correct.

When I was 3, I started at nursery school but I refused to join in with the other kids and my brother or the staff usually did the activities for me! I also still had immense difficulty with grasping cutlery or beakers and dressing. When I was 3 and a half, I began to talk-interestingly, I began speaking in full sentences straight away, rather than graduating through the different stages of speech development. My speech was very nasal (I tended to pronounce everything with a D in front such as douse for house or mouse etc) and incomprehensible to everybody but my parents. At the time, I kept getting repeated attacks of tonsillitis and it was noted that I had abnormally large tonsils so it was thought that my speech was down to this. It was also noted that I had very slack and weak mouth muscles which meant my top lip was almost on level with my nose-in fact, it still is today. This, although they didn't know it at the time, was down to dyspraxia. When I was 4, I went for an operation to remove my tonsils along with my adenoids-the operation took place in the afternoon and, that night, I kept everyone on the childrens ENT ward awake all night with my incessant chatting!

During my early childhood, it was also noted that I was a precocious reader and had a thirst for knowledge that other children my age didn't have-I had read every medical textbook in the house cover to cover by my sixth birthday and tried to diagnose my family members with all sorts of medical conditions based on what I had read and I used to read the Sunday times cover to cover too-in fact, there is video footage of me on holiday in Cornwall when I was 4, reading The Sunday Times on the beach-my dad was asking me questions about what I had read and I was telling him!

My parents were confused about how advanced my reading skills were and how my interests were a lot more mature than those of other girls my age but, yet, my motor skills were still so poor that I couldn't be relied upon to dress myself or feed myself. They were also bemused by my obsessions-I had many of these over time ranging from pregnancy and childbirth (this took away my innocence at the age of 5-when my classmates still thought babies appeared out of thin air, I knew all about sexual intercourse!) to models of pushchairs to disabilities (which is still present today). They were all I would talk about and, no matter how much they tried to show they were bored through their facial expressions, sighing etc, I just didn't get it and carried on! By this time, I had a younger sister too and they were shocked at how little interest or attention I paid to her-I preferred playing with my teddy bear to her!

Meanwhile, my teachers were concerned at my lack of social skills in the classroom which were just as bad as they were at home. They were also concerned at my lack of ability to follow instructions and my self stimulating behaviours such as flapping my hands, clapping rapidly, whole body rocking and waving things in front of my eyes. They had never encountered this. I was also picked on by the other children, particularly the older children, a lot. I was also having bladder control problems at this time as I had an irrational phobia of black toilet seats, which were the colour of the toilets at school, so I would avoid using them at all costs. I also still wet the bed every night which stressed my mum out a lot! During this time, I was having regular physio input as well.When I was 6, I was diagnosed with dyspraxia after my auntie, who is a special needs teacher, suspected that that was what I had-I was diagnosed by an occupational theorist and ed psych.

When I was 7, I was referred for a dyslexia assessment as, at that time, my spelling was very poor-this changed though-4 years later, I had a spelling age of 18 at the age of 11! The report said that they thought my problems were more psychologically based than dyslexia and recommended that I see a child psychiatrist. The first one we saw suspected autistic spectrum disorder but dismissed it on the grounds that there wasn't a family history of clumsiness which later turned out to be untrue anyway as my paternal great grandfather was known for being clumsy and always had cuts and bruises and couldn't be trusted to do anything physical without breaking something or injuring himself! Petit mal epilepsy was also suspected because I would frequently "zone out" and have a blank facial expression and glazed eyes but this was later ruled out as was ADHD and familial abuse (yeah you did actually read that right!!!!)

My language was a concern to everyone involved as, although it was fluent and eloquent, I often had no emotion in my voice and spoke in a monotone manner. I also took things very literally-one day, for example, I was getting ready for school and I was always very slow in getting dressed-my mother told me to do my teeth first and then get dressed in the car. To me, as she didn't say "finish getting dressed in the car," I assumed she wanted me to get undressed and then get dressed again in the car so I removed my clothes-this got me told off severely by my mum!

Finally, in March 1995, I received my offical diagnosis of Aspergers Syndrome. I was sent out of the room while my child psychiatrist told my parents what that meant-all I remember was swinging around on the receptionists chair! I was then given a statement for 15 hours 1 to 1 help a week and one 30 minute occupational therapy session a week and, after that, I did get more friends and my social behaviour improved slightly. However, the bullying was still going on. When I went up to secondary school, I was terrifed as I was the only one from my primary school there and the bullying worsened. This was the first time in my life that I truly felt lonely and isolated and I was frequently in tears. However, I did have a few close friends who I got on fantastically with. Then, when I was in Year 9, I began weekly boarding at my school and made a lot more friends after that as the communal boarding house setting does help. At this time, I also had weekly social skills lessons along with 3 other pupils who were also on the autistic spectrum-these taught the basics of conversation that most people take for granted such as turn taking, not repsonding to taunts, talking at the appropriate level (although this, along with turn taking, is something I satill struggle with although not as much as I used to) and talking about appropriate topics, eg, not overly sexual or explicit.They also taught us not to take things too literally, although this can still be a struggle for me at times. These sessions really helped and I was sad when the LEA withdrew them because of financial constraints.

Fast forward 7 years and you have me today. I have 3 As, 1 B and 6 Cs at GCSE level and 1 B and 2 Cs at A Level to my name and I am now in my final year at Kent University where I am doing a degree in Criminology with Sociology which is fascinating! After I graduate, I plan to travel the world for 8 months and then work as a learning mentor of some fashion as I believe I can use my experience with my difficulties to help others. I still have my problems but I have learned to live with them. The only thing I really desire at the moment is a boyfriend-hopefully I will find one who is willing to climb the barriers my difficulties cause for me and be my special guy!

Anyway, I need to go now and this post is very long-apologies to you all-I hope it didn't send you to sleep!
"This above all, to thine own self be true." - Polonius, Hamlet.
parnassus
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