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Top Tips

CharlotteL's picture
by
CharlotteL


Top Tips

Thu 15 Oct 2015 12:28pm

Hello everybody,

For our next newsletter, we would love to have a regular "top tips" section for parents/carers and families. 

This month we'd love to know your top tips for parents and families who may be going through the diagnosis process for their child or someone they know?

We also welcome suggestions for any future top tips ideas.

Look forward to hearing your thoughts.  

--
Charlotte

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  • SherpaMum's picture

    My top tips are be patient, expect the unexpected and go with the flow.  Never be afraid to ask questions.  Never be afraid to make yourself heard and chase things.

    at the first appointment I was asked what I thought was wrong with my son.  I thought that was why I had gone to the paediatrician!

    we were sent on a sensory day, but had no idea why.  Only when you look I to things does it become clearer.  We were referred to a course, after chasing it several times I received a referral for an arm splint clinic!  No idea were that came from.

    when you finally get a diagnosis, no matter how much you are expecting it, you still feel like you have had all the wind knocked out of you.

    hope these help.

    If any one is going through the diagnosis process and has any questions please post them.

  • CharlotteL's picture

    Thanks SherpaMum. Those are brilliant. 

    Charlotte
  • JosieB's picture

    Hi Charlotte

     

    After giving this some thought I think it's a good idea to take a  notebook and pen with you to appointments with prepared questions and also to take notes of what's said.  Quite often you come out of these appointments and can't remember half of what was said to you.

     

    Future top tip topics could be looking for schools, getting help/support with education matters.

    Josie - Community Champion
  • NNatalia89's picture

    I would say don't b afraid to say your opinion and make sure I've been heard! First appointments may be really confusing so it's good to have a list of all symptoms, behaviours, sensory issues etc not to forget about any thing important and make sure u will tell it all! I was trough diagnosis process 3 times by now, and just start process 4th time (phew I will be an expert soon heheh :p). First assessment was for my older boy. At a time I didn't even heard about autism (I know how ignorant of me). He was under peadiatrician since he was 8 months old due to been premature baby and having (diagnosed much later) Right Sided Cerebral Palsy Hemiplegia. I always said what ever was worried me, and didn't allowed any one to talk me off by saying it's my first baby so I'm just worry to much and there is nothing wrong etc. I was lucky having good peadiatrician who pick up my worries as possible autism and send him for 10 weeks multi assessment when he was 3  (OT, salt, physio, orthotic, psychologist, and also autism specialist), after which he got his diagnosis. My 2nd assessment process was with my younger boy (now 2 and a half). By then I learn plenty about autism and it's symptoms & treats. By age of 18 months I was sure his on spectrum and knew his diagnosis was a matter of (very frustrating) time. Time when first u need to do eye & hearing checks etc even when u know they are fine! And time on waiting list for actual assessment date. So my next advice is hang on there! It's worth it! 3rd assessment process was for my self, so adult version. Again put everything on paper, most likely u will be so stressed that u will forget your name (I did - lol). But then there was no real need to actually be stressed although assessment felt very "under my skin" and make me feel having my most secret feelings "naked" so I was very emotional at a times. And now I'm in 4th assessment process. I'm helping my sister in low trough assessment for her son (5y). First peadiatrician appointment. Again as she's kind of "new" in all this, lots of questions have no sense and are confusing to her. I telling her that she will understand importance & it's sense in time but as for now to answer the questions as honestly and specifically as she things, even if she things that something on her mind is not important or "normal" for that age child. For example; Q: "What is his favourite toy?" A: "Lego", Q: " What he doing with them?" A: "Currently making/building planes." And here's "her" first mistake answer as it wasn't specific. The answer she give telling the peadiatrician that he can play a form of imagine play, where in reality his not. Above situation was happen just this week, and is real example. Very quickly I did explain to peadiatrician how he actually plays with Lego. My A: "He have at home two different bags with Lego blocks. One is "Batman" themed and blocks are made in a way that he can only build plane with instructions and Mom's help. If he plays with his 2nd bag which is ordinary Lego blocks bag (and which he got bored of last weeks) he will build towers". My answer was as real & true as his Mom but more specific and showing no imagine play which is one of autism symptoms in early years. She (Mom) didn't know that those specifics are important and why until I explained to her on our way back home. So most important advice to parents "new" in the topic is to be very specific. Also one more advise is that no matter the assessment result your child is still the same brilliant and beautiful and lovely child it were before the process. No diagnosis that's great, I've got diagnosis? That also great! It won't change your child but will give opportunity to get best early support and therapy access possible, and the sooner the intervention (help) the better the results! Good luck to everyone within assessment process! Smile

    Autism. It's not a processing error. It's a different operating system.
  • CharlotteL's picture

    Thanks so much all. These are brilliant.

    I think pen and paper and lists are a really good idea. Like you said there is a lot of information to take in so that would be really helpful.

    Thanks Josie for the other top tip ideas too. 

    Charlotte
  • CharlotteL's picture

    I meant to say are you all happy to be credited in the newsletter e.g. "from JosieB on Talk about Autism forum" or "from NNatalia89 on Talk about Autism forum". 

    Charlotte
  • JosieB's picture

    Hi Charlotte

     

    Yea, that's fine.

     

     

    Josie - Community Champion
  • Buttercup's picture

    Pen and paper are also a good idea to make a note of what the professional has said they will do. I recently had the experience of a professional promising to chase something up, and another saying she would make a referral - neither of these things happened! 

    i now have a notebook for the purpose, and I make notes at every meeting or appointment. I have a lever arch file for letters and reports too, as well as the advice leaflets you get handed, so I can find something at a moment's notice. It is amazing how much paperwork there is for a four year old child! 

    when my son was first diagnosed I was really keen to be a 'good special needs mum' and I tried really really hard, putting every suggestion into place and staying up late to laminate pictures and set up the playroom for the next day. These were useful things to do, but I ended up feeling so burnt out by it all. It took me a while to realise that not everything that was suggested was appropriate for my son and I needed to take a bit of time over everything. That seems kind of obvious, but I was so desperate to help him I wasn't really looking at what he actually needed. If I could do it all again I would tell myself to slow down a bit! 

    It helped to pick one or two things to work on for a while, which helped me to feel less overwhelmed. Now a lot of the things we do have become second nature. 

     

     

    Amy - Community Champion
  • NNatalia89's picture

    Yes that's ok Charlotte Smile

    Autism. It's not a processing error. It's a different operating system.
  • Buttercup's picture

    I've been thinking about this today. I think one of the ,out important things for me is being my son's number one fan. So much of the language around autism is negative, particularly in things like statements and clinical reports, it's really important to counteract that in order to get a balance.

    its also important to get support for yourself, and time for yourself to do things that you want to do. You can't run on empty. I find I need to schedule in time to do that. If I just say oh I'll do that when I get the time, it never happens! I keep having to relearn that one. 

    Amy - Community Champion

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