Ticking over and @lauren_holmes12 “Waiting” #ThisIsAutism

By | April 17, 2014

A peaceful day today has followed a busy and emotion-filled one yesterday, just what was needed for T and D. I aim to separate out busy ones with a what-some-might-consider boring so as not to build up the over-stimulation and anxieties.

There have been plenty of smiles and cuddles from D, plenty of concentration on his stats and football facts from T, both have different ways of relaxing and calming.

Considering all the uncertainty around where T will be going to secondary school (we’re appealing a place refusal at our first choice), the fact that his football season ends on Saturday and that his intellectual and emotional capabilities are far higher than D’s (which I sense frustrates him, that she’s not at his level) and he’s not doing too badly.

This Is Autism

It’s nearly a year since we received T’s diagnosis of high functioning autism and tonight’s guest post by @lauren_holmes12 aka bloggermummylauren.co.uk is one I can definitely identity with.

The uncertainty, the parental guilt felt from delaying seeking initial assistance, the knowledge that a “label” could potentially change how your child is viewed and the knowledge that until this “label” is received, very little support will be available. And of course, the waiting, the constant requirement to chase up appointments with (very) over-stretched departments, it all takes time and can be emotionally draining.

Over to Lauren and “Waiting“:

“I’m Lauren, Mummy to Neil who is 5, and Caitlin who is 4. We are currently in the middle of a long process of diagnosis for Neil. While he may not have received an official diagnosis of anything, we are expecting, and have been pretty much told by health professionals that we meet, that he will receive a diagnosis of high functioning Autism/ Aspergers.

Being our first child, I think we missed a lot of the early signs because we didn’t know what was and wasn’t considered normal. He was always just our perfect little man. We started to notice differences when his sister started growing up alongside him, and did things differently, or hit milestones before him despite being a year younger. Still, I never gave a second thought to Autism.

All I knew, or thought I knew, of Autism was what I’d seen on tv, Rain Man or someone non-verbal, and my son was nothing like this. I had no idea that there was so much more to Autism, that there were different forms, that it was a spectrum. It was only when I started to Google things that this whole new world began to open up and the overwhelming process of trying to digest the information that is out there on this subject.

The first bridge I think mentally I had to cross was essentially for a lack of a better way to describe it believing that there could possibly be something wrong with my son. Being honest this was probably the hardest thing to do so far in the process. I wondered was it me imaging things, will I be putting him through unnecessary appointments and testing etc. will the doctor think I am mad, am I being mad, I went through a million scenarios in my head before I finally phoned the doctors to make an appointment to see my GP.

Once I went to the appointment, the GP literally looked at Neil, spoke to him briefly and referred us on. The appointment then came through about 6 months later and that was pretty much the same, spoke to Neil for a bit, asked him to do a few exercises in story telling, play, etc. then we were referred on again, and 4 months later another appointment. This one was just an appointment to make you think you weren’t waiting to long for the real appointment if I am honest. They asked very general questions about him and give us couple of questionnaires and “see you at the real appointment in another 4 months as we are backed up but can spare an hour to do this nonsense with you”. (Felt like this should of been the first appointment as it referred us back to the same people who had referred us on after the first hospital based appointment). I am not annoyed at the length of time the process takes or anything but the appointment with just parents felt a little like “the questionnaires in the post, you will get a date soon” would of done the same job and saved us travel costs and babysitter.

Which leads me to the present day and waiting for the appointment where we will get a diagnosis, fingers crossed. This limbo stage so to speak is somewhat of a difficult period as there is not really much support from local health services without being able to produce a formal diagnosis. I have tried to essentially learn as much as I can from books from the local library, the internet, blogs and autism groups and take what I can and put it into action within my son’s day to day life and within the home to try and make life as easy for him as it can be.

Its also one of the reasons I got into blogging as I had found quite a bit of helpful advice, tips and even comfort from reading other peoples stories on blogs that I thought I would try and do the same. I try to add ways to do some of the things I have seen on websites that are to help autistic children that to be honest are often out of my price range at a budget price at home, which can have the added benefit of being tailored to the childs interest’s so has a double benefit in that sense. I also hope my blog is an honest account on our journey through ASD, and general family life, and hopefully people in my position can relate, and take comfort in knowing they are not alone, or even just laugh at our silly family stories”.

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I hope you all don’t have to wait too much longer, Lauren, thanks for writing for #ThisIsAutism.

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4 Comments

Stephs Two Girls on 21st April 2014 at 9:19 pm.

I do think it is crazy how long they make people wait for a diagnosis – and very unfair at that. You’re right it should open up doors to some support for you, although it sounds like you’re doing a great job of helping yourselves and helping him so far. Good luck with the ‘journey’ x

Reply

Jeannette on 23rd April 2014 at 9:12 pm.

Thanks for reading and commenting, the stress of waiting and hoping is far too long. I can’t see it getting shorter with the new Act coming in.

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rebecca beesley on 1st May 2014 at 1:44 pm.

It is sooo frustrating waiting for those appointments and diagnosis – Especially when you see your child struggling day in day out (we were at the end of our tether with schools at that point and after waiting a year and a half had to get a private diagnosis as we could stand to see our son going through that any longer). I too get a lot of comfort from blogging by knowing there are others out there who understand (when all too often ‘real life’ friends don’t always understand). xxx

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Jeannette on 11th May 2014 at 3:16 pm.

Thanks Rebecca, we were “lucky” I guess that both D and T were diagnosed at their first respective appointments. So many people are caught up within the system with no clear guidance or timescale and it must be incredibly stressful and frustrating.

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