This is a problem I have had since entering the kiddo into the additional needs healthcare system. All the professionals are so keen to concentrate on “the positive”. “Let’s look at what he can do” they say, whilst I’m desperately trying to get across what he can’t. Now at face value this would seem a very sensible proactive approach to take, but actually it causes a lot of people a lot of problems when attempting to get their child assessed, and here’s why.
1. Right here, right now, in this meeting, I don’t want to look at the positives. I’ve waited 6 months for this meeting so we can specifically discuss what he can’t do. Why? So we can get the support we need, the education he needs and the money he needs. I can’t afford for the “positives” to water down and dilute what my everyday experience is like. I need you to see the hardest days in my eyes, the stress held in the lines on my face, the sleepless nights by the odd socks I wear. I will talk about what I love about kiddo all day and all night, you couldn’t stop me! But right here, right now, it’s not about that. It’s about the hard times and how you can help my family.
2. By saying “oh but he can do this!” And “isn’t he fabulous at doing that!” you completely undermine and belittle the experiences I am currently trying my absolute hardest to dictate to you. I’m reliving my worst nightmare as I sit here, telling you about my parenting fails and lowest moments. For you to respond by saying “oh but it’s ok because he can do “x y z” “, you playdown the experiences I have had, you make me feel as though I’m being over dramatic and above all, you make me feel as though I’m not being listened to.
3. The fight for services is real. There is not enough to go around. In order to stake my claim on what kiddo deserves I must shout the loudest of all and play the saddest tune. Why? Because autism is an invisible disability. There’s no physical proof except the scars I hold on my soul. The evidence I must provide is all around behaviours, and for this there are two ways I can provide such evidence. Exhibit A: videos of challenging and unconventional behaviour signalling a developmental problem or delay. Exhibit B: Me. My stories. The narrative I provide in this meeting is what my son’s future education and welfare plans will be based on. And I’m on a time limit, because in an hour you move on to the next family. So no, right now I do not want to paint a picture of my life similar to an episode of Topsy and Tim where my child is (freakishly) impeccably behaved the entire time.
4. I can’t afford to let him be seen as “borderline” autistic when he isn’t. You would think the diagnosis of severe autism with profound communication difficulties would be enough to secure such things as a specialist school place. It isn’t. After attending a million meetings on these subjects I feel as though people are discussing what my son doesn’t need, rather than what he needs. Phrases such as “well let’s wait and see” and “well he may not need that” are frequently thrown around with such ease as a paper airplane. And why? Because services are sparse. Support is thin on the ground. Resources are reducing by the day. And if the deciding committee get one hint that in ten years time my child may not require some minute service that is actually making all the difference to us, they will take it away now. So forgive me if I don’t spend this meeting singing “rain drops on roses” from The Sound of Music. Because believe me, I will still feel bad at the end of it.
Now I’m not saying we shouldn’t look at kiddos abilities at all, we just need to make sure they are in proportion to his disabilities or else we run the risk of sinking down the crack in the middle and being lost forever. If you want to hear all about my love, admiration, hope and ambition for my child then please do come over for cake and a cuppa! I’ll talk at you so much about this subject you’ll want to borrow his ear defenders. For I am proud, happy and hopeful as his parent. It’s just right now, it’s not what I’m here to discuss. And there’s no way I’m allowing a positive attitude at the wrong place and the wrong time to stop my child from receiving everything he needs to function in daily life.
Thanks for reading,