Friday, April 15, 2016

Somewhere on the Spectrum. Written by Kelly Kemp

Somewhere on the Spectrum
The First Day of the Rest of Our Lives
Hi. My name is Kelly. I am married to Dave and have two kids: H, who is 7,and Tink (not her real name, obviously, although in this day and age, who can tell?!) who just turned 3. Periodically, there’s also J, who is 17 and getting a life, so, sadly, we don’t see as much of him these days. Right, that’s the background done…
Yesterday our whole world was turned upside down.
Our beautiful, funny, loopy, clever, stroppy, clumsy, amazing daughter was diagnosed with autism. Autism Spectrum Disorder. She’s ‘on the spectrum ‘. Whichever way you put it, that’s it. A game-changer. For life.
Now, obviously, this wasn’t totally unexpected. Around 18 months ago we asked for a referral to speech therapy services as we were concerned at her lack of speech, and at the eventual appointment other ‘issues’ were raised that hadn’t even come onto our radar. When we received the report and ‘The’ A’ Word’ was mentioned, alarm bells started ringing! “No! She couldn’t possibly be! It’s just her speech, surely?” She was referred to a paediatrician…
When that appointment came round (these things do take time; you hear about it, but they really do), we spent half an hour in a tiny, unfamiliar room with a strange and rather cold person attempting to make our 2 year old play with baby toys, which, of course, she didn’t want to do. “Does she do things repeatedly?” we were asked. “No, not usually,” I reply, as Tink sits on my lap, taking squeaky eggs out of their egg box and putting them back in… Repeatedly.
That report came back in agreement with the speech therapist’s assessment that Tink did show some traits that may indicate autistic tendencies. Sigh.
So, this then led to another long wait for developmental assessment at our nearest Child Development Centre. This took place this spring and involved two mornings of assessment.
By now, I had removed my fingers from my ears, stopped ‘la la la-ing’ and had made tentative steps into reading up more on ASD. Also, as part of my work as a Preschool Manager, I had attended a level one autism awareness course, during which I sat blubbering as the realisation dawned that my daughter – my own daughter – just may be one of the children we were learning about. Rather embarrassing when sat amongst other childcare professionals on a course.
The assessments didn’t go too well – Tink was rather uncooperative, but I guess that was most likely just a trait of what we now know is her condition. They went to see her at her Preschool too, as they wanted to see how she interacts with other children and how she responds to requests from other adults, seeing as they didn’t get this information on the assessment days!
So this brought us (after another month of waiting) to yesterday. D-day. The day we find out if our precious little Tink is ‘just a bit behind’ and it’s something she’ll grow out of, or if it’s a lifelong condition we’ll have to get to know very well. After reading through the assessment report, it still wasn’t clear as to what the diagnosis was – we assumed they would tell us this in person, but we could take a wild guess. We waited nervously, Tink playing happily in the background with a nursery nurse from the centre, until, eventually, two official-looking people entered the room. Deep breath…
The paediatrician was very sensitive to our feelings and broke the news quite gently. After explaining the findings in the report, she stated, rather tentatively, that she was diagnosing Tink with Autism Spectrum Disorder. She looked a little surprised that we didn’t look surprised. In fact, although it’s a huge piece of news, it was a relief to finally know. For sure. To have ‘the diagnosis’ that we can use to get Tink some help and support throughout her life to make it better. Great, even. Of course, we know that this may not always be easy. People make the right noises about ‘early intervention’, but in reality, there is little funding available much of the time and it can be incredibly hard to access. But we have ‘the diagnosis’, so it’s a start.  
The paediatrician made a pretty sharp exit, leaving us with the teacher we had seen during the assessments. She was not quite so sensitive, and proceeded to bombard us with information, leaflets, talk of education health care plans and so on. We literally have a pile of booklets, leaflets and website addresses to work through. We were waved on our merry way with a “ring if you need us!” – and off we went. Out into the big, wide world with our beautiful, autistic daughter and a whole new world ahead of us. The first day of the rest of our lives… and it’s looking pretty scary right now. Wish us luck!

Join Kelly and Tink's adventures daily on her FB page It's a Tink Thing
 and her blog with the same name. 

2 comments:

  1. It's never easy to get the diagnosis, it rocks your world for quite a while. I remember the feeling of relief that there was in fact a reason why my child did what she did and could not speak. In a way it is a day that you will grieve for forever but it's also the start of a new beginning. Tonk sounds like she has an amazing family behind her, she is a lucky girlie :) (Blooming Autism) xxxxx

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    1. That should say TINK lol. One should never cook and type at the same time......

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