One Year On…

Today is the first anniversary of receiving Tink’s diagnosis. One year since we went into the Child Development Centre feeling nervous, to emerge a while later feeling relieved and confused, but determined. Determined that this diagnosis would not be a label, but would be the key to accessing the support our little girl would clearly need for the rest of her life.

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Tink. D-Day. June 2015

What have we learnt in the last twelve months?

We have learnt that a diagnosis doesn’t change a person. Tink is still Tink. The same crazy, beautiful, clever, funny Tink she was the day before the diagnosis. It just enabled us to put her in some sort of context. It enabled us to grow a better understanding of some of her behaviours and sensory issues and how these might affect her, and how to help her cope with them.

We have learnt that a diagnosis actually isn’t a magic key to a wonderful world of extra support, services, resources and help. That actually, we still have to fight for these, to a certain degree. We have been fortunate; Tink has been granted an Education, Health and Care Plan, which is something that I have learnt is really rather difficult to obtain, even when needs seem to be so great that it’s a no-brainer that a plan should be given. Tink’s plan is at draft stage, so there are still lots of finer points to be sorted (and added, if I get my way!) and we’re not at the end of the battle yet.

We have learnt a hell of a lot about autism. And probably only scratched the surface! I have devoured information from websites, leaflets, books, online presentations, and from real people, living with the condition, either themselves or in their family. And I still feel that all I really know is Tink. The saying that ““If you’ve met one person with autism, you’ve met one person with autism,”(Dr. Stephen Shore) is just so bang on. I see similarities in other children, but so, so many differences.

We have learnt that making decisions is really, really hard! We’ve had a few to make over the last year, mostly to do with education, and we are still trying to learn to trust our gut. I’m a terrible decision-maker at the best of times, but, when it comes to deciding on your child’s future, especially your child with special needs, it’s virtually impossible! I can’t but help think of all the ‘what ifs?’ and the ‘how will we/she?’ questions that pop up and try to second-guess everything all of the time. What I really want to be able to do is just go with the flow. Trust what my instinct is telling me is the right thing to do and just see how it goes!

We have learnt that we need to be adaptable and yet, routine. Tink has always been fairly flexible, happy to go along with things, but, as she’s getting older, we are finding routine and predictability are what she’s needing more and more. This, in turn, means that we need to be more flexible with our expectations. Plans can go out of the window at the eleventh hour if Tink’s anxieties about something take over. Expectations for happy days out may fall flat; what we think will be a good time for everyone may just prove to be too much for Tink to cope with. Even seemingly simple things, such as a change in who is collecting her from nursery can end up with an anxious, extremely upset little girl. And woe betide the person who tries to read something other than ‘Peppa’s First Sleepover’ at bedtime.

We have learnt that our other children are fantastic. Not that we didn’t already know that, but that they are fantastic with a sister who needs that bit extra. A bit of extra understanding, a bit of extra attention and a lot of extra patience. H struggles with it daily, but he really tries. He tries so hard to play with Tink, even though she often rejects his attempts and when she does deign to play, she doesn’t often understand the rules, or what’s required of her, or she gets bored after approximately 0.000453 seconds. He often asks questions about Tink and her condition to try to understand her better, which, at 8, is a big ask. I feel sad for him that Tink isn’t quite the sibling he was hoping for when, almost 5 years ago, we told him he was going to be a big brother. But it’s coming, slowly. J is the best big brother a girl could wish for, and, other than Tink’s grandparents and teachers, is the only other person we would dare to leave her with for any length of time. She absolutely adores him.

We have learnt that we have amazing family and friends. People who have only ever offered love and support and never judgements and criticism. I honestly don’t know what we’d do or where we’d be without my parents, who are our child care when we’re at work, as well as our emotional support. They have never shied away from caring for Tink and are so utterly on our side. They share our joy whenever she does something new or unexpected and are there to lend a listening ear and sage advice when we’re struggling with some dilemma or other. And there are friends we can talk to too – both in real life and in the virtual world. These people may or may not be on a similar journey, but they too are willing to listen, understand and advise.

We have learnt that we belong to a new family – a huge family of others in a similar situation. This became apparent to me last year, at the Twycross Zoo Dream Night , where many ‘special needs’ families come together to spend a wonderful evening feeling comfortable and not judged. We’re lucky enough to be able to go again this year, and we can’t wait. I have joined groups – both real life and online, where I can ask what feels like the silliest of questions and I will get answers – lots of them – from people who know what it’s like to doubt yourself or just to feel lost in this strange, new world.

We have learnt that given the right support, lots of patience and a good dose of understanding, Tink can make good progress in her development! She has come on in leaps and bounds since starting school nursery class last September: her speech is much improved and she sometimes says actual sentences with three or four words. She can ask for things, tell us if she’s hurting or unhappy or if she doesn’t like something. Her understanding is much-improved and she’s much better at following directions. She is making the first, tentative steps towards interaction with other children and she is much better at interacting with adults, albeit still on her own terms much of the time! And school have some targets to work towards in the areas that aren’t coming along quite so readily, such as her attention and concentration, particularly for adult-directed tasks.

We have learnt that our daughter doesn’t like her arms bare, will not eat fresh fruit or vegetables (unless they’re disguised), will still only take milk from a baby bottle, and is absolutely petrified of the vacuum cleaner. We have learnt that she loves being outside, especially if it’s wet, muddy, sandy or there’s sea. We have learnt that she has an amazing ability for ‘scripting’, and will reel off chunks of her favourite TV shows or sing songs endlessly. We have learnt that she likes to sit right in the middle of the sofa, that she is trying to interact with other children in her own, clumsy way and that bubbles are good if she’s heading for meltdown. We have learnt that she needs no instructions to play new apps on the tablets, that she can navigate her way to that same YouTube video every time , despite us trying to hide it and that she learnt to recognise and name all the letters in the alphabet in just a couple of days. We have learnt that she likes to be close to another (me) to sleep, has no intentions of giving up her dummy and that she has an incredible sense of empathy for others. We have learnt that she has a wicked sense of humour, no sense of danger and that chocolate is one of her favourite things in the world – ever. We have learnt that she constantly challenges our expectations, and exceeds them on an almost daily basis. We have learnt that as well as all her quirks, and differences and needs, she is still just a ‘normal’ four-year-old girl.

But most of all? We have learnt that the world is a much brighter place with Tink in it.

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