Guest post by Rebecca @mummyest2014 | www.mummyest2014.Wordpress.com
There are people out there who will say we shouldn’t ‘label children’. However, a diagnosis isn’t a label, it’s an answer, a reason, a reassurance. It can lead to better understanding, acceptance and tolerance. The system can say support is ‘needs based’ but let’s face it, a diagnosis definitely helps!
I have two boys, my eldest (J) was 2 when he was diagnosed as autistic. That diagnosis opened doors. We met other families in the same boat as us and I found we got a new level of understanding from people. The education system definitely takes it more seriously as he is classed as disabled and so, is a protected characteristic. Don’t get me wrong, it doesn’t change who he is as a person. However as he’s gotten older it has helped him to understand why he is the way he is, and that’s he’s not ‘naughty’ or ‘weird’. He knows there’s a reason for how he feels.
My youngest (F) is 4, and we have had support with him since he was 1. First via health visitor, then speech therapist and now a specialists health visitor and a paediatrician. He is being assessed but it’s a long drawn out process full of ‘let’s wait —- months’ and ‘let’s see if this helps’. We get DLA as he has identified additional needs that require higher level of care and support than his peers.
However, not knowing the why’s behind his behaviours and his development pattern is hard. I have my suspicions but I find myself scared to say them out loud in fear of being called a label chaser or that I just ‘want’ my child to be neurodivergent for attention. The fact is I recognise the traits. I recognise the patterns. I recognise the triggers. I’m the one who picks up the pieces after a meltdown, and I’m the one who puts things in place to support him. I know him best. But my views aren’t truly valued – it’s the professionals who have that power (and expertise) to give that diagnosis and say ‘yes this is because…’.
I was hoping to have a clear answer before he started school. However that’s not going to happen. If there is no diagnosis to be given, I’d rather know. If there is, then I’d rather it be put in place so early intervention can happen. I’m fortunate that he has a great nursery and support is in place. I’m hoping this support works in reception too. But right now I don’t know if his struggles are long term, will go away, will come and go etc. I know that J will be autistic for all of his life. We have a community to learn from and help us navigate different stages. I don’t have that with F.
F has a disability buggy. He needs this as he is generally unsafe when out and about, and easily triggered by sights and sounds. He has ear defenders and sensory toys. We use the disabled toilets (he can’t cope with hand dryers). These all help him but when people ask questions I get imposter syndrome and find myself over explaining. I know. I know, I don’t owe anyone an explanation but my mind isn’t always a rational place! I think a diagnosis makes communicating your child’s needs easier and taken more seriously.
I love my boys. They are wonderful, hilarious, clever little beings and all the traits they have, shaped who they are. I wouldn’t change anything about them for the world (well, maybe I’d change the sleepless nights). However, knowledge is power and diagnosis leads to knowledge. Right now I feel in a limbo. That irrational part of me thinks ‘is it me? Is it just my parenting?’. I just want someone to say ‘it’s not you, we see it too’.
So for now, I continue to support each trait, each sensory issue, each difficulty he faces the best I can. I find what works for us and I go with it. I do the activities and suggestion set by the professionals and document progress/challenges. I keep all reports, letters, education plans in a folder, I follow up action plans, I make notes and lists of things I want to bring up with professionals. I can’t look up specific support terms like I can with J, but I can google things like ‘supporting emotions’, ‘communication games’ to gain ideas and insights.
I hope that one day soon we get an answer – whichever way that goes. If you have made it this far and you find yourself recognising these feelings – maybe you went through it yourself or maybe you are going through it now. If you do then you are not alone. You are an amazing parent and you just keep doing what you feel is right for your child. I’m always happy to chat if you ever need a listening ear.