Who will help my child?

I am tired. I am exhausted.Little M is regularly waking during the night with night terrors, fear of the dark, her duvet not being ‘right’, lost her toy etc etc But that is not the reason for my exhaustion.The reasons are this :-

1) I have fought for nearly 3 years to get support, understanding and a ‘formal’ diagnosis for my son. he is slowly having some support put in place at school- his ‘formal’ diagnosis has still not happened yet.

2) I have had concerns about my daughter for some time now…. the stress of ‘ is this ‘normal?’ ‘Isn’t this just like her big brother at this age?’ and the whole bury your head in the sand and stick your fingers in your ears and go ‘ la, la la’ because this can’t happen twice… can it? And then the stress when you realise yes it can , but who the heck is going to listen to you and you think….. you’ve been through this … surely people will listen THIS time….

3) You get referred to a ‘specialist’ children’s nurse ( not ‘ specialist’ in ASD’s , sadly) rather than a paediatrican ( think because this seems to be the ‘way’ for girls in our area- haven’t got to the bottom of why this is the case.) Who looks at the 7 pages of concerns, listens to the family history, tries to engage with my beautiful girl ( who hides behind her bag and says not one word) and decides, ” Although I am no expert, I think she is on the ‘extreme end’ of normal and I think she will surprise you.” She will ring the nursery ( who say they have ‘no concerns’ – just as my son’s nursery did with my son because a) they aren’t trained to notice the sometimes subtle ( and sometimes not so subtle- yet still fail to spot it) way children present with high functioning ASD’s and anyway aren’t all children with autism boys? Like Rainman?

4) You have some VERY tough times with your daughter where she is ‘ lost in herself’ , very echolalic, rarely smiles and the only thing that raises a smile is a ‘squeeze’ in a duvet , a ride on a swing or to line her Disney Princess figures up over and over again ( and pretty much anything else she plays with.) Where the need for control is so strong it is very difficult to get through a day without feeling like it is a constant battle, where the needs for ‘ sameness’ is so strong that going the ‘back way’ home rather than the ‘front way’ results in a meltdown of such huge proportions , people cross the road to avoid the scene and people offer helpful comments like ‘ she needs shutting in a box!’ and my daughter is almost physically sick from screaming and hysteria.Then the violence in the meltdowns start.

5)Then you notice the that some of the meltdowns have a pattern :- guaranteed after nursery. Just like my son. Where the pent up stress and anxiety has to be unleashed.I do not drive and I am only fortunate that my son has had some good days and I haven’t had to deal with both my children in full blown ‘ M’ mode ( sorry if the ‘ M’ word offends anyone – it seems in some ASd circles it is not ‘ good etiquette to mention it. But to hell with etiquette , this is reality.)Because I really don’t know how , not how I would cope, but how i could keep them both SAFE. That simple thing we think we can do for our children and I don’t know if I could do that if they are both in the throes of an ‘M’ and we are near a busy main road…. I struggled to hold my daughter on her own today.

6) After chatting to nursery staff you realise they HAVE indeed noticed some things about your daughter but never thought to mention it to me OR to the specialist nurse. Things like :- likes to walk round in circles, always pretends to be ‘ stuck in mud’ in a car ( reinactment of Peppa Pig) screams and covers ears if the water tap is turned on full blast or the handryer is used, can’t go near the pet rabbits as ‘ they smell’ and she starts gagging. She spends more time with the adults than the children. Then you realise they are perhaps ‘scared’ of her behaviour as she ‘ kicks off’ when they try to prompt her to put her trousers on the right way round , so they leave her to look a numpty with her trousers obviously on the wrong way round ( patterns up the back, zip to the front), or leave her to wear fleece hat and mittens and coat despite soaring temperatures because they “tried as her hair is all sweaty underneath, but she wasn’t for having it!” This said by the nursery MANAGER. There is ‘ child led’ and there is ‘ child controlled’ …. one aids child development, the other avoids confrontation for the sake of the staff……

Tonight I held and rocked my daughter after she had worn herself into such a state after leaving nursery… I had been hit, kicked, screamed at inches from my face ( all with onlookers enjoying the scene) to try and make her feel safe in a world she is clearly finding overwhelming and scary. I say clearly, it is clear to me and her close friends and family. I always held the ridiculous idea that if your child was suffering and needed help, your child would get it.My experience with my son showed me how wrong I was. My daughter is suffering daily, but I have no-one who will listen to me and take my concerns seriously. Her behaviour is way outside the ‘ extreme end of normal’, yet her specialist nurse is not willing to accept that.She is not under a specialist of any other kind as this nurse seems to act as a filter. The nursery are not qualified to comment as to my daughter’s struggles and yet feel able to say she is perfectly fine’ to the one person who may help her.

Every where you read about the need for early intervention for autism …. where is it please? Where can I get that for my children? Why do children have to suffer because of a ‘postcode lottery’ when it comes to help and it just so happens that my area is one of the worst in the country with regard to the length of the diagnostic path for ASD’s and for the lack of support before and after. It is AT LEAST a 14 months waiting list to be assessed for an ASD. But what people don’t realise is that it can literally take YEARS before you can even get anyone to place your child on this extensive waiting list and then when the ‘diagnostic day’ comes…. a high functioning child can ‘not reach the threshold for a diagnosis’ if they happen to be having a good day and a high funtioning girl is at a double disadvantage…..the diagnostic instruments are trialled on boys and only valid to assess the symptoms as they present in boys…. girls can present VERY differently.

So who will help my child? Her family….. that is the only support my beautiful daughter can be sure will be there.

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2 Comments (+add yours?)

  1. syzygysue
    May 21, 2012 @ 23:01:21

    Great flow chart 🙂

    Reply

  2. highlanddream
    May 22, 2012 @ 06:13:23

    Thanks Sue- have hubby to thank for that one:) At least we haven’t lost our sense of humour!

    Reply

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N.B. the title of this blog comes from my son’s very literal understanding of ‘ magic carpet ride’ ….. he believes this to be a ‘car pit’ ( as in ‘ sand pit’) and demonstrates this with a plastic lid and toy car. The magic comes in when the toy car is covered with the lid and it disappears!

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