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where do i start...

tml12

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

  • Hello Pixiefox thank you for the reply and kind words.

    In answer to your question regarding my daughter and her diagnosis. She was on target or ahead on all of her milestones developmentally until she failed to learn to speak- her speach delay is primarily what highlighted her autism- followed by a health visitor feeling she just wasnt quite social enough. However she had had constant ear infections every other week for about 18 months by the point of diagnosis and natually this masked things a little- as well as contributed to some of her delay. She was a late walker at 18 months but that is the only other thing. Her eye contact was also poor but this was picked up later. So initally her speech delay was the main flag. She is still behind with speech but making fab progress now and is only a year or so behind. She is very bright and tends to learn very quickly - if taught as a visual leaner. She is highly observant and often teaches herself thigns that we have no idea she has seen much less watched.. I caught her trying to pick the shed padlock the other day because she wanted her bike and she knew you put something into turn and open so she tried a stick....she is very resourceful. She is also very social and loves pretend play now. She is incredibly affectionate and if presented with a room full or toys or a room full of people would always choose the people. She has the social want and does very well we support and teach where needed- although its often hard to judge what she would pick up on her own with time versus what she needs more help with as with her its quite subtle.

    In regards to myself yes I have taken the test - I actually did it twice as wasnt sure if I was being too hard on myself or not seeing what I do find hard. I scored 29 the first time and 25 the second.

    I would not be surprised if I am on the spectrum- as the more I have learned the more I seem to fit however I am not sure in my case whether it would help me or not to know and tend to err on the not.

    I struggled with friends throughout school, from the day i started to the day I left being bullied both physically and mentally. I do not read people well- in that I cannot always see their true intentions of course that could be very much a case of believing the best of people which is how my partner would describe me. He also says I am too kind for my own good. I also tend to blow things up out of all perspective and can be very black and white in my thinking- of course this is also common with OCD which I am diagnosed with as well as anxiety. I no longer work as I stay home with my daughter - and between anxiety, OCD and Rheumatoid arthritis traditional work can be a challenge. I have had some roles which I have loved and done very well at but struggle with the pychological impact of pressure and targets and worrying that I am not good enough, or will disapoint so end up piling the pressure on myself until I cannot cope and end up suffering bouts of depression.

    I also had a very tramatic birth with my daugther and suffered medical negligence resulting in PTSD.  So I guess for me I dont feel its very clear cut as I have several conditions which could be argued to overlap or indeed result in the way I think/act. I am also very unsure on pursuing it any further as I dont know what I personally feel it would achieve for me if that makes sense.

Reply

  • Hello Pixiefox thank you for the reply and kind words.

    In answer to your question regarding my daughter and her diagnosis. She was on target or ahead on all of her milestones developmentally until she failed to learn to speak- her speach delay is primarily what highlighted her autism- followed by a health visitor feeling she just wasnt quite social enough. However she had had constant ear infections every other week for about 18 months by the point of diagnosis and natually this masked things a little- as well as contributed to some of her delay. She was a late walker at 18 months but that is the only other thing. Her eye contact was also poor but this was picked up later. So initally her speech delay was the main flag. She is still behind with speech but making fab progress now and is only a year or so behind. She is very bright and tends to learn very quickly - if taught as a visual leaner. She is highly observant and often teaches herself thigns that we have no idea she has seen much less watched.. I caught her trying to pick the shed padlock the other day because she wanted her bike and she knew you put something into turn and open so she tried a stick....she is very resourceful. She is also very social and loves pretend play now. She is incredibly affectionate and if presented with a room full or toys or a room full of people would always choose the people. She has the social want and does very well we support and teach where needed- although its often hard to judge what she would pick up on her own with time versus what she needs more help with as with her its quite subtle.

    In regards to myself yes I have taken the test - I actually did it twice as wasnt sure if I was being too hard on myself or not seeing what I do find hard. I scored 29 the first time and 25 the second.

    I would not be surprised if I am on the spectrum- as the more I have learned the more I seem to fit however I am not sure in my case whether it would help me or not to know and tend to err on the not.

    I struggled with friends throughout school, from the day i started to the day I left being bullied both physically and mentally. I do not read people well- in that I cannot always see their true intentions of course that could be very much a case of believing the best of people which is how my partner would describe me. He also says I am too kind for my own good. I also tend to blow things up out of all perspective and can be very black and white in my thinking- of course this is also common with OCD which I am diagnosed with as well as anxiety. I no longer work as I stay home with my daughter - and between anxiety, OCD and Rheumatoid arthritis traditional work can be a challenge. I have had some roles which I have loved and done very well at but struggle with the pychological impact of pressure and targets and worrying that I am not good enough, or will disapoint so end up piling the pressure on myself until I cannot cope and end up suffering bouts of depression.

    I also had a very tramatic birth with my daugther and suffered medical negligence resulting in PTSD.  So I guess for me I dont feel its very clear cut as I have several conditions which could be argued to overlap or indeed result in the way I think/act. I am also very unsure on pursuing it any further as I dont know what I personally feel it would achieve for me if that makes sense.

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