I was given some sage advice this week. I have been struggling a lot recently with everything that’s going on in my life – work, home, kids – Tink in particular… the list goes on. A wise person (I’m sure you know who you are) told me I need to stop and look at what I’m doing well and stop stressing and worrying about the things I can’t change, including things that are yet to come. There’s no point worrying about those things yet, as we don’t know how things are going to pan out. Of course, she’s absolutely right. But I am a born worrier. I am a planner. I like to know what’s going to happen, when, how, who is involved… I don’t like it when things go wonky – it makes me anxious. So, I’ll try my best, but I can’t promise I won’t worry about future events.
Especially as also this week, we have received forms to complete ready for the ‘Big Meeting’ we’re having at the start of next month regarding Tink’s Education, Health and Care Plan (EHCP). The questions asked form part of an important document which, if granted by the powers that be, will be a part of Tink’s life until she’s 25.
As part of the plan, both the child and the parents are asked to give their views on what their hopes and aspirations are for the future. Obviously, as Tink is just 3 years old and has no concept of what her own hopes for her future are, we, her parents, have to answer for her, as well as ourselves. How do you answer that? In a meaningful, achievable way? I want her to be happy; to be able to communicate her needs and feelings so that she’s understood; to be able to live as independent a life as possible and, most of all, to be accepted. Is this too vague? Too long-term? It’s funny, isn’t it, that we all want our children to be happy, but the other things are pretty much taken for granted if your child is neurotypical. Why wouldn’t they be able to tell us what they want? Why wouldn’t they make friends and be included? Why wouldn’t they grow up, get a decent job, move out, get married, have kids of their own… and so on?
Yes, we don’t know what Tink’s future holds: she may well do all of those things with relative ease – it’s early days and we can’t know. But it terrifies me that these things we usually take for granted may be a real battle for her and that we need a plan to help her achieve them. The very fact that we and her SENCo feel she needs a plan at all indicates that it’s not going to be plain sailing for her, especially once she starts school.
There are lots of shorter-term goals that I’d hope can be worked on too, such as increasing her attention and concentration, improving her speech and language, being able to access most, if not all of the curriculum once she starts school, making friends with others. Whether she will achieve these seems as uncertain as the long-term goals at the moment!
But, the advice given to me to take each thing one step at a time applies to this too. Tink is Tink. She’s not going to ‘get better’. There’s not actually anything wrong with her to get better from! She’s just wired differently to most other people. She needs help with these things because society isn’t geared up for people like Tink. She may learn to talk in a way that means people can understand her, so she can express her needs effectively or have a conversation with someone… or she may not. We’ll just have to find a different way of helping her to communicate. She may eventually be able to concentrate on a task long enough to complete it so that her teacher is satisfied – or she may not. She can concentrate on things of her own choosing, such as the iPad, so maybe we have to make adjustments to allow for this in her learning, if that’s how she’s going to learn best? She may, one day, be able to say she has real friends, with meaningful relationships… or she may never be able to form these, and maybe she’ll be okay with this.
Whatever the outcomes, we’ll deal with it. One step at a time.