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New mum

Kim84

Hi everyone, 

             Just wanted to introuce myself & seek some help really. I'm Kim, 28, originally from Birmingham but now living in Bristol. I have a daughter Ella who is 4 in December & a brand new baby Aidan who was born in early September. 

Over the last year my partner & I have become concerned about our daughter as she reached 3 & still wasn't able to converse with us like other children we had encountered at the same age. No matter how hard we worked she just did not want to talk to us, even to ask for simple things like food & drink. For the past few months she has been seen by a lot of health professionals (Health visitor, SENCO, Health centre nursery nurse, pediatrician & speech therpaist). She has now started to make progress with the speech & social skills, mainly thanks to the pre-school she started to attend at easter last year, but autism has been one of the things they have flagged up & keep bringing into conversation, but no diagnosis has been made yet. 

I don't mean to offend anyone but I was devastated at being told she could have autism until then they had said it was a delay that was "fixable" she would just catch up. To then be told actually its not a delay & we think it's something you cannot fix was heartbreaking. I felt I had failed her, it was my fault it was something I did or didn't do that's made this happen. I still do to some extent. 

Since having my 2nd child Ella has started displaying difficult behaviours which never occurred before: waking at night singing & talking to herself very loudly, climbing on tables & chairs, switching lights on & off, etc. I am not sure how to deal with these new things as she does not understand to be quiet or that climbing is dangerous. She loves her baby brother & tries to help me, but I'm not sure if such a big change could have caused this sudden change in behaviour.

I'm just really looking for some support as at the moment I'm struggling to come to terms with what is happening & the fact that things are likely to change now for the forseeable future, that my little girl is always going to have this label now. 

Any help much appreciated, thanks Kim x

 

  • Thank you I will try that, I must admit I probably have been wording it wrong so will definitely change my wording & think about it more. 

    Thank you for the help. x

     

  • Kim84,

    Try bribes.

    We, on the spectrum, are often reward driven, so one can get us to what one wants by offering us a reward (or bribe) for doing it.

    It does have to be worded as a reward though - saying "do X or you won't get Y" won't work - it needs to be "if you do X then you can have Y".

  • Thank you, I haven't been on here for a while as I have been in denial I guess. A speech therapist has now said she thinks it is speech & language disorder which obviously I thought great she isn't an ASD child after all, but the area senco still thinks it is autism so we are no closer to a diagnosis. I don't know what to think anymore & Ella's behaviour is becoming more & more challenging. She is improving in lots of areas,following instructions, eye contact, doing more for herself, etc but when told no she can't have or has to do something she doesn't want to do, all hell breaks loose. I have no idea if she is being a typical 3/4 yr old (she is 4 on the 21st Dec) or whether this is a trait of the possible ASD. 

    Does anyone have any ideas on how I combat this?? Today it was she wanted to push her brother in the pram, but it's too heavy for her, so I had to help, but she didn't want me to, pushing me away when I tried to help & then screaming when I told her I had to help but she could help too. She also will not hold anyone's hand when walking all of a sudden. 

    I fear she is starting to copy some children who are autistic at a local group we attend for special needs children & that is why her behaviour deteriorates more on the days following her visit to the group. 

    Thank you for all your kind words & I will read the post you directed me to.  xx


     

  • I agree about the dont worry about causing offence....... I suspect most people (with a asd child) at some point have heard that diagnosis in relation to their child and thought "oh not my child!"

    The one thing i would say to you is to read as much as you can - information is invaluable at this point xxxxx

  • Don't worry about offending anyone - it is really, really frightening when someone first mentions the word autism because you can't possibly know what it is going to mean for your child.  Every child with an ASD is completely different.

    Happy Days is right.  Your daughter won't have changed simply by someone naming what it is that makes her different, whether it is autism or not.  A diagnosis gives you something to work with.  

    My son was 2.5 yrs when diagnosed.  There was an awful lack of information about what happens next and what to expect from people so I wrote a letter and posted it on here in the diagnosis section, called ' A letter to the parent of the newly diagnosed'.  Read it if you need it, but fingers crossed you don't.....

    Best of luck to you all. x

  • Thank you, your exactly right, I know a small amount about the spectrum from experience but it is nothing like dealing with it on a day to day basis. The pre-school are amazing & have really pushed to make sure the SENCO & speech therapists don't let up & start letting things drift. 

    Just hoping that once the assessment is complete we can start to move forward with management & helping us all get our heads round it & start to move forward.

    Had a good day with her today did some baking which she loves & made me realise exactly what you said, she hasn't changed she just needs different type of care to my son. 

  • hi again, im not at all offended, i know its very difficult to come to terms with initially , it can take some getting your head around particularly as you said you never imagined that one day you would be faced with a child of your own who was on the spectrum. like i said though your little girl hasnt changed at all shes still the same little girl you love and adore. I guess although people tend to know about autism (well some people) the realitys dont really hit home untill its actually you and the people you love  that are affected by it.

    Can get quite frustrating waiting for the assesment, the good thing though is thatyou seem to have placed your daughter in a good pre school it sounds quite supportive of her which can make the world of difference. 

  • Thank you for the reply, I hope I haven't offended you by describing it as something that cannot be fixed I just couldn't think of any other way to desribe it. But what you said does make sense & I know I have to accept it & cannot change it, I suppose I just never thought that Ella could/would be autistic & so it's come as a huge shock. 

    I trained as a primary teacher & so know a tiny bit about autism & have experienced it whilst doing my training so I know how different 2 autistic children can be depending on where they are on the spectrum. I guess I just never imagined I would one day be faced with a child of my own who was on that spectrum. 

    The assessment centre won't start official assessment for autism until January. So a little while to wait yet.  

  • Hello Kim,

    You say no diagnosis has been made yet, im taking it that as your daughter is being seen by professionals and Autism keeps being mentioned that a formal assesment for Autism is underway.

    The way you are feeling is completley understandable, lots of mums including myself go through the self blame thing and the worry of the dreaded "label".Fact is There is nothing you could have done, its not your fault. Ive heard it said that you kind of greive for the child you thought you were going to have. I guess in a way its right. Your daughter is still the same little girl she has always been though, nothing about her has changed.

    If your daughter does have Autism its important to remember that it is a Spectrum condition. ( a huge spectrum) so affects people very differently.i I say this as im picking up a little that you persume your daughter wont be able to do certain things, that things are not "fixable".

    Its true that if your daughter has autism she will share some difficulties other people with Autism have lifelong, but Your daughter is still very young dont persume that just because your daughter cannot do something now she wont be able to do it as she grows older. My daughter didnt speak untill she was 5 then one day she started speaking  in nothing but opposites for about 12 months, i was shocked it wasnt that she couldnt i guess she didnt want to? who knows? she is 10 now and speaks very well. I prefer not to think that my children need "fixing" more that they do things a different way, a way which works for them and that their way of doing things even though it may not be seen as "normal" also needs to be respected. Its best to work with it because you cant change it.

    I love all of my kids and although i would take away any difficulties they have in a heartbeat if i could, they simply wouldnt be the same children if they didnt have autism.( i hope that makes sense)