Getting close to diagnosis?

Well Samantha has now been with our local paediatrics team for 9mths & is nearing the end of her initial assessments.  We have a 'feedback' session scheduled for the end of April when we will hopefully receive our diagnosis on things (her delayed speech & behaviour).  More often lately I am believing we will be told autism/childhood OCD as she is becoming more & more obsessive over things (where toys/furniture is positioned, how people have their arms/hands, where everybody is positioned within the room, which seat she sits in, looking out a particular window, dragging her hand along items she walks past).  Fingers crossed we get our answers next month (& not another string of assessments).  She has started nursery 3 days a week so she is getting SENCO support there (& we get extra helpful tips).

Hope everyone else is ok.  Best wishes to all.

Posts

  • Wow, it sounds like things have been tough with Samantha. That's good that you are getting close to having some proper answers. That's good that she's getting SENCO support at nursery, it sounds like a good one.

  • Hopefully you will get the answers. I know it depends on different authorities to whether they will diagnose this young. I know how annoyibg it can be. My oldest is 6 and has seen a paed since he was 2 they always said he was aspergers but still not willing to commit to a diagnosis now because it is not our local areas way of doing things. They say they do not do formal autism assessments until at least the age of 7 and there is a 4 year queue. There are others who I know from different areas of the country who were given a diagnosis by 4 so they received the support they needed.



    My second son who was born in dec 09 is also nearing a final decision about whether they are going to operate on his mouth and throat. He has always had problems eating and talking and as a result didnt grow fir such a long time. He is now so small he looks like a twin with my lillte girl who was born in july 2011. She will overtake him soon! However they are finally set on doing it and are hoping to operate the last week in may a week before my 4th baby is due to be induced!



    Whoever said a life with children was simple!!



    Hope you get a quick answer let us know how you get on
  • Well the assessments are all completed (Hurray).  Now we wait for our final feedback meeting 14th May, where all feedback from Nursery, Playgroup, Paediatrics, HV, GP & bloods will be collated & diagnosis made (Paediatrics have told me they have enough to go on to make diagnosis).

    It has been difficult, Samantha still talks very little & communicating with her is highly frustrating for both parties (she knows what she wants to get across & is frustrated when we can't understand, just as we're frustrated at not understanding & still having to guess 3yrs down the road).  Having Aspergers myself, there are days I question whether my parents went through all this with me (& did they react in the same manner DH & I do).  Both my girls are also do to see musculoskeletal at the end of May to see whether they have my Hypermobility (strong suspect YES, they're both so flexible).

  • I am glad they have enough for a diagnosis.will hopefully ease your mind. My oldest has hyper mobile joints as well as aspergers. He does extremely well at gymnastics! 

     

    I can empathise with the communication difficulty. Oskar my 3 year old gets so cross when people don't understand what he says because of his speech problems. He gets up huffs and walks off tutting! His lack of clear speech is made up by his big attitude and personality!

  • Well, we've finally got our confirmed diagnosis of 'Autism', she is showing all the classic flags as concluded from just about everyone who has seen/interacted with her.  Now we move forward with the next steps in having educational support coming to visit both at home & nursery, getting her statemented ready for school & the more daunting task of looking into which school/the level of learning support she'll need.

    My planned 'job hunt' has now gone out the window as more & more appointments, visits & 'care plans' are being arranged.  Nursery are struggling on some days because she still doesn't really know how to communicate her wants & needs & can seem to be quite spiteful to the other children when trying to get them to play because there are no words just pulling, pushing & hand gestures to try & convey her wishes.  Potty training has gone out the window again because of the lack of communication & feeling so overwhelmed at times.

    The nursery are now able to apply for additional government funds & 'care staff' to assist with Samantha in her final year before school.  I am going to be meeting with Educational Support regularly over the next 6mths to help try & determine what learning needs she has ready to select our choice of schools for enrollment.  I've been told to apply for DLA & if successful with that to also look at my Tax Credits as I may be entitled to more.  I've been told to speak to the paediatrics team about 'free nappies' until she's potty trained as it could be months/years before she is.

    If I'm overwhelmed trying to process all this, DH is struggling with his half acceptance that she's autistic but still half expecting that this time next year she'll be completely different & ready to start school like every other child her age (if we've had this little progress in 3.5 yrs with her why would this coming year be any different regarding speech & toilet training?)  It doesn't help with my well-meaning mother & DH not seeing eye-to-eye & both of them quick to jump at the other one with shouts of 'You're clueless' or 'You're in denial'.

    So onward & upward, more appointments due in the next few weeks, just wishing I had more answers now (how to communicate when she's shown little interest/acknowledgement of sign language but 'flash cards' she just sits & rips apart?) Hope everyone else is doing ok.  Best wishes.

  • Have you tried makaton for communication? I had to use this with my first as he would not communicate properly until he was nearly 4. I am glad you have a diagnosis to help her for school. I would definitely push for a statement as it can take a long time in schools while they gather evidence not always though.

    I hope everything goes well with the appointments and they give you the support you need. Have you looked at the autism support groups online as I found them really useful when getting my dh to adjust to reality with my oldest being different. He still has times he doesn't get it now.
  • So far Makaton is something I'm still trying but she's hit & miss with it, she either sees it as a game or just isn't interested.

    DH is having a very hard time of it, there are times he still struggles understanding me with my Aspergers so now having to deal with our daughter being at the opposite end of the spectrum to myself he is struggling to understand that some of her traits will be akin to mine but that she will also have differences.

    Yes I have found & joined several support groups both online & local to me, it's great being able to chat with other parents in a similar situation & share experience/tips.  It can be interesting again watching the children who are all so similar & yet so different.  AUTISM - Always unique, truly intelligent, sometimes mysterious image

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