where do i start...

I am trying to be brave and post but I have not idea where to start. Its taken me a year to get this far... and i hope I word it ok.

I have a beautiful, kind, clever and amazing little girl. She is my world and will be 4 in October. Just before her third birthday she was diagnosed as on the autistic spectrum via ADOS.

She has a speech delay and is a year or so behind but other wise there or there abouts where she needs to be developmentally and has no learning disabilities- if anything she is considered bright. She goes to a mainstream preschool with no extra support- she absolutely loves it- joining in with all the activities, transitioning well, actively playing with the other children (today when I picked her up she has been playing with another child and a bandage pretending to be horses). She has no ECHP and will not be getting one before school as all the professionals involved feel this is unnecessary and any needs can be met through the standard school budget. (this delights and frightens me in equal measure).

She has quite an imagination and will tell us there are lions in the bedroom or want to pretend to look for dinosaurs. She is quite social and can always be found in the thick of things- she has the social interest and we support and teach where needed.

She has no behaviourial issues, no stims, no sensitivites and is generally a easy child. I could take her anywhere and do. She does not mind routine changes or change full stop- she settled far quicker when we moved recently than our dog did. She seems to take things in her stride.

My hopes are high for her future - she will have all the love, help and support she needs along the way. I struggle however as I suffer severe anxiety and also have OCD. and often wonder if I am on the spectrum myself. I do not always know how best to help her nor even what she needs as her difficulties are both mild and subtle- in fact unless you knew she would be very hard to pick out... this sometimes makes it hard to know how best to help.. and believ me when i say I/we try so hard.. always learningas much as we can questioning the professionals and literally using all the advise given...

I have attended various groups and the early birds course but if I am honest have struggled as the parents at those groups have children with much more significant difficulties and have struggles I cannot relate to despite being very keen to. I have yet to meet other parents who have a child with such mild difficulties or even a parent with a grown up children who are similar to whom I can relate. I would also love to hear from anyone who was a child like my daughter. I know everyone is so different but I would love any help/info and thoughts on what you would have liked your parent to know/do. 

My daughter is an only child- we have always wanted more but I worry that if we had another child with additional needs I might not be able to give them both everything they need- especially if another child had more significant needs. I do hope that sounds ok... my daughter is the most amazing child and the greatest joy of my life and my priority is ensuring that whatever choice is made has her best interests at heart. She loves babies and other children- and quite likes the idea of a sibling- although whether she would want to return them after arrival is anyones guess!

Please forgive me if this is not worded well - I truly mean no harm to anyone- and everything typed is meant very kindly. So please if in doubt take my words with the kindest possible interpreation if they are not worded well.

Parents
  • Hi tml12 and welcome 

    I'm a middle aged woman, who had no clue I could be on the Autistic spectrum until a few months ago. Your story intrigued me as it got me wondering whether I would have been diagnosed as a child if I had been born more recently. I was wondering what prompted your daughter's diagnosis? 

    I too had a vivid imagination as a child - I had an imaginary friend before I started school. I was bright and learned very quickly. I loved books and was always two years ahead in reading. I never had a large group of friends, but always had one or two I could play with, and later talk to, although these changed over time as I changed schools or classes but this wasn't a problem. My teachers reported that I was a quiet well behaved member of the class and they seemed to like me. I always loved music and taught myself to play guitar at the age of 11. I fell in love with my partner at the age of 16 and we've been together ever since. I've had various jobs, including special needs teaching assistant, esol teacher and assistant accountant. I can plan and deliver training and presentations. My creative mind sometimes sees solutions others miss and I have great attention to detail. I've been described as a good teacher and a caring person. 

    But...

    I had anxiety issues from around 7 or 8 years old. I remember getting tummy aches when it was time to go to school. I rarely got invited to parties - I can only remember that happening 3 times, and the second and third times (when I was 10 and 13) I got so worked up thinking about it I made myself feel sick and didn't go. I found many of the other children difficult to relate to - I remember wondering at one point if they were all robots and I was the only human. At junior school I spent a lot of time in class sitting reading in a corner. At secondary school I was bullied by another girl for a while. When I went to sixth form college I became quite depressed and was on anti depressants for a short period of time. I've never stayed in the same job for more than a few years - I find it really difficult to deal with any sort of criticism and have been really upset by many managers and colleagues in the past. I'm a great conflict avoider, so I'll just remove myself from an uncomfortable situation. I've always got tired quickly when I'm around other people and I've always needed a lot of sleep. I have mild sensory issues - I'm very sensitive to cold, loud sudden noises and the size labels sewn into clothes (I have to cut them out)

    My family never understood me. They tried to make me believe that I was being manipulated by my partner, but I gradually started to realise it was they who were manipulating me, or doing their best to even when I resisted.

    I think you'll be a great parent to your daughter though - you are obviously very caring and dedicated. Have you taken the AQ test to see if you might be on the Autistic spectrum?  It's available online and is a reliable screening tool used by the medical profession as a starting point. I took it after watching a documentary which piqued my interest in autism and was very surprised at the result (I scored 40 out of 50).

    If you have any questions, feel free to ask. 

    All the best 

    Pixie 

Reply
  • Hi tml12 and welcome 

    I'm a middle aged woman, who had no clue I could be on the Autistic spectrum until a few months ago. Your story intrigued me as it got me wondering whether I would have been diagnosed as a child if I had been born more recently. I was wondering what prompted your daughter's diagnosis? 

    I too had a vivid imagination as a child - I had an imaginary friend before I started school. I was bright and learned very quickly. I loved books and was always two years ahead in reading. I never had a large group of friends, but always had one or two I could play with, and later talk to, although these changed over time as I changed schools or classes but this wasn't a problem. My teachers reported that I was a quiet well behaved member of the class and they seemed to like me. I always loved music and taught myself to play guitar at the age of 11. I fell in love with my partner at the age of 16 and we've been together ever since. I've had various jobs, including special needs teaching assistant, esol teacher and assistant accountant. I can plan and deliver training and presentations. My creative mind sometimes sees solutions others miss and I have great attention to detail. I've been described as a good teacher and a caring person. 

    But...

    I had anxiety issues from around 7 or 8 years old. I remember getting tummy aches when it was time to go to school. I rarely got invited to parties - I can only remember that happening 3 times, and the second and third times (when I was 10 and 13) I got so worked up thinking about it I made myself feel sick and didn't go. I found many of the other children difficult to relate to - I remember wondering at one point if they were all robots and I was the only human. At junior school I spent a lot of time in class sitting reading in a corner. At secondary school I was bullied by another girl for a while. When I went to sixth form college I became quite depressed and was on anti depressants for a short period of time. I've never stayed in the same job for more than a few years - I find it really difficult to deal with any sort of criticism and have been really upset by many managers and colleagues in the past. I'm a great conflict avoider, so I'll just remove myself from an uncomfortable situation. I've always got tired quickly when I'm around other people and I've always needed a lot of sleep. I have mild sensory issues - I'm very sensitive to cold, loud sudden noises and the size labels sewn into clothes (I have to cut them out)

    My family never understood me. They tried to make me believe that I was being manipulated by my partner, but I gradually started to realise it was they who were manipulating me, or doing their best to even when I resisted.

    I think you'll be a great parent to your daughter though - you are obviously very caring and dedicated. Have you taken the AQ test to see if you might be on the Autistic spectrum?  It's available online and is a reliable screening tool used by the medical profession as a starting point. I took it after watching a documentary which piqued my interest in autism and was very surprised at the result (I scored 40 out of 50).

    If you have any questions, feel free to ask. 

    All the best 

    Pixie 

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