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Hello everyone

Mrs Mummy

Morning everyone, hope you are all well. I'm looking for guidance and support, heres my story:

I am Mum to a wonderful 5 year old girl who has had problems since birth. She was diagnoised with hypermobility and this was the reason I was given for her not meeting any of her developmental mile stones. She was two years old before she walked.

She was a good baby who hardly ever cried, slept well and was easy to care for, so you can imagine the shock I got when aged 3 she started lashing out and being defiant.  The nursery she was at were concerned about her development and advised me to seek medical advice.  She was assessed by a health visitor at this time and they discovered that she had developmental problems so we were sent to a child development specialist.  I've been seeing this specialist since Georgia was 3 and we get 6monthly reviews. To start with she told me that my nursery just couldn't cope with a difficult child, then she tried to tell me we were experiencing the terrible twos and Georgia would grow out of it. The nursery teacher suggested a year ago that Georgia might have aspergers. She cares for a family member with the condition and said Georgia's behaviour was the same.

The child development speialist has kept the same opinion all the way through, Georgia makes eye contact and therefore couldn't be Autistic.  Well she started school last August and although it took a few weeks to show, the behaviours started again and more importantly as time goes on things are getting worse.

I feel like my 5 year old isn't growing up, shes getting younger again. She picks rubbish off the ground and food and puts it in her mouth (she never did this as a toddler), she gets up frequently during the night (she used to sleep right through). Shes always had a flare for jigsaw puzzles and has been doing 6+ jigsaws for at least a year but yesterday she struggled witn a 3+.

She struggles with school, not just the classwork but trying to socialise. She has a fasanation with hair & pulling it which means the other kids don't want to play with her. She hates being touched and lashes out constantly now.

I will cut my extremely long story shorter, we saw the child development doctor on 21st January and she said Georgia has ADHD and probably Autism, then had the cheek to ask me to leave because she had another appointment. My whole day was dreadful because of that half hour appointment at 1.30pm, right in the middle of the school day. Poor kid didn't want to leave school.  I didn't so much as get a leaflet and now I feel so lost.  As each day passes I feel like I lose a little bit more of her. Shes regressing and its so scary to see, mostly because there is not a damn thing I can do about it.

What am I suppose to do when she hits me?  Do I give her into trouble or just ignore it?  I have started just saying "thats not nice" and leaving it at that because I don't know if she understands.  The school have been fantastic and are giving me info about home support help but of course there is a waiting list.  They are struggling at school, although she has support teachers, they can't be with her all the time so I have given up my job to be at school with her during the day.  I only go in for a short time everyday but we thought if I could help her concentrate she might start learning.  She can't read or write, she only started scribbling a couple of months ago. Georgia calls me Mrs Mummy when we are in school, bless her.

I am due to see the child development doctor in March but that seems like a lifetime away. 

I'm sorry for rambling on, ive just no idea what I am suppose to be doing and I don't want to make anything worse.

  • Thank you for the tips, I will put them into practice and write letters.

  • Otter thank you so much for the advice about hitting. This is what I will do from now on. 

    You are so kind to say that I'm a good parent. I often doubt myself and sometimes wondered if I made things worse with my reactions.

  • "although very difficult you need to remove all emotion from your response and command with eye contact if possible in a clear normal voice "child's name, hands down, feet down, quiet, still" breathe/pause and then direct her to another activity

    if you respond emotionally it may enforce the behaviour. Your child's understanding of your emotion will not mirror your own"

     

    sounds like a good tip, above from otter, I would assume NAS might have some info as well on dealing with aggression

  • Hi Mrs Mummy, yes it is frustrating about the lack of coordination and the lack of timeliness on all of it. Think of yourself as the person that needs to coordinate the others rather than waiting for them to do it.

    Please trust me about the letters, the professionals involved in your child's care have to listen if it's written in a letter and it helps focus them on what the issues are. You'll be amazed how things just seem to start happening as soon as you start writing letters. Most people worry about kicking up a fuss and that they will be labelled and that child's care may suffer in some way as a result. This is not the case. Those that shout the loudest get heard and whilst this isn't really fair it is not your responsibility, however your daughter is, and by fighting for a better service for your daughter you will improve services for others in the long run. Managers pay attention to letters and it helps them focus on what services are needed most. Keep your letters as unemotional as possible. State the facts as simply as you can, use bullet points or numbered points and state what you think needs to happen next e.g. a referral or that you need a meeting/telephone call to clarify some of the issues etc. If you are really not confident writing some letters and there's no one that you can ask for help I am more than happy to look at any letters you write and help edit them, I assume you can 'private message' me on this forum (?).

    Remember that all the professionals do care about your daughter but they are running round like headless chickens and will actually appreciate you taking a leading role. Get assertive not angry (well maybe a little angry as it helps motivate us!)

    Good luck

  • she hits you - okay

    although very difficult you need to remove all emotion from your response and command with eye contact if possible in a clear normal voice "child's name, hands down, feet down, quiet, still" breathe/pause and then direct her to another activity

    if you respond emotionally it may enforce the behaviour. Your child's understanding of your emotion will not mirror your own

    as they say men are from mars and women from venus, I am not sure which planet I am from, but emotionally speaking I do not think it is this one- though I am unsure of the theory of extreme male brain, when it comes to interactions between autistic children and their mothers' which I have encountered there seems to be some realisation

    I apologise if what I am attempting to explain does not make sense

  • I am not a parent and I am unlikely to ever be

    however I read your posts and see the parent I wish I had

    thank you

    and thank you for your perseverance in fighting a corner for your daughter

  • Thank you so much for responding Onions Mum. I have already started keeping a very detailed diary and a list of who we see, what they said etc.  I am just feeling so frustrated at the moment, like I'm the only one who is concerned and wants to move foward with diagnosis, treatment and a constructive plan of action. Right now one medical person blames the delays on another and I just wish they would stop bickering and listen to me. They all do alot of talking but nobody actually listens.

    I didn't know there were other charities, so thats my next step - To read & educate myself on what they should be doing.

    Thank you again and I hope things are well with you.

  • Back again. After you see paed in march, if you are not happy in any way, you must

    write to your g.p asking for a second opinion from another paediatrician, keep this letter brief. Use the word 'regression' in every conversation and letter you write repeatedly. It is a big red flag and should be taken very seriously. Write to your g.p asking for assessments from OT, physio, educational psychology. Also hearing and sight checks, essentially all these assessments are in guidelines for the assessment of any child with delays. Chase up each of these departments to ask when your daughter will be seen.

    The best thing we have done to date is visit a specialist school, we are lucky to have a suitable one nearby, it made us realise what can be achieved with the right support and was really uplifting. Your local LEA website will have details of local specialist schools or specialist units within mainstream. 

    Please believe me that letters are the way forward, they get everyone focused and create a paper trail. Remember, you know your daughter best and you are her best advocate. 

    Good luck.

    p.s my final tip is that I got a nice little pocket book that I write all my notes in of who I have phoned and when etc. just quick notes whenever I am in meetings or on the phone, it has been invaluable.

  • Hi mrs mummy, first of all let me say I know sod all about autism, I've come to the site tonight because my (just) 4 yr old girl has now been identified as having distinct social communication difficulties which look a lot like autism from what I can tell but as she already has lots of other labels we are resisting another! She has global developmental delays, bit floppy and walked at 2 and significant learning difficulties. Probably functioning at somewhere between a 2 and 2.5 year old. The advice I'm giving is purely based on my own experiences so far and bear in mind that I think we've achieved a lot with my daughter because I am assertive / bloody minded. I think this helps. The first tip I am going to give is to write letters. Write as many as you can to as many people as you can. Write to her paediatrician with your concerns and questions, this will only improve the care your daughter gets. Write to her head teacher asking for clarification of exactly what support she has received to date, what assessments they have done and what they plan on doing next. Is she having individual education plans yet? If not these need to start, read more about it at the IPSEA site. Talk to people at the various charities such as IPSEA about whether now is the right time for you to request to your local education authority a statement of educational needs. Listen to the charities advice on this as they are impartial, in general you will find many people try to put you off making the request for an assessment as once done it is a legal document which protects your daughters educational needs, although not perfect they are far better than empty promises of support. Breaking off for a mo will continue my post in a bit...