5 As promised here are my current five best bits about being a parent carer of a child with ASD. For lots of ‘hard things‘ it’s a real joy to be H’s mum!
You notice and appreciate the small things
When progress is slow and a child is behind you are forced to celebrate the little things more. You take less for granted as every bit of progress matters. It also helps you to see past the academic and removes you from the inevitable unspoken playground competition! H said ‘I love you’ to me for the first time when he was 4; it was well worth the wait and a joyful memory! A good friend noticed H chose to sit for dinner with everyone else last week which is real progress. He is now able to walk home when the lollipop man isn’t there and the routine is different which wasn’t possible last year without a meltdown. You get the idea…
You get to be part of an SEN community
A knowing glance, encouragement or similar story shared is so helpful. Everyone has a unique journey but it’s so comforting to meet other parent carers who understand personally some of the issues and struggles. This allows you to feel less lonely. There are some great charities and support groups to which are a privilege to be a part of. We live in a time where Autism awareness is ever increasing and provision is so much more than years gone by. It’s an exciting time for ASD in our society. Watch this space…
Parenting a child who sees the world differently can make you question your own logic – and makes us laugh a lot! Whoever says people with Autism don’t have a sense of humour haven’t met H or many others I know. You mostly know where you are with him and whether he’s enjoying something or not. He’ll put his fingers in his ears if he doesn’t like the singing, yawn if your boring him or tell you food tastes disgusting! In some ways he is much less complicated, you can see in his behaviour straight away when something is wrong – even if you don’t know what!
We enjoy more time, trips, visits and fun as a family because of H’s needs. I would have probably gone back to work by now which is hard, as I loved my job. Yet with all the appointments and need for routine this isn’t currently possible. This does allow me to be involved in different things like the school PTA, church groups and lots of lunch and coffee with friends. Free carer tickets (you get two at Blackberry Farm!), complimentary tickets, queue jump tickets etc. allow us to afford lots more activities than we would have done otherwise. I am ever trying to be more thankful for the lots that we do enjoy rather than looking at what is hard or what we don’t have. A constant challenge…
A look to something more
When life is hard and not what I expected it’s ‘good’ for me, it reminds me of what really matters. Decreasing H’s anxiety is a top priority so more TV, iPad time and chocolate buttons has made this easier – all in moderation of course! Having less ‘parenting guilt’ over these and other things is a definite SEN parenting perk. This life isn’t it and there’s even better to come with the hope of heaven. Every time I am reminded of that hope it helps my perspective, allows me to remember I cannot rely on myself – thank goodness!
Although it is tough it really isn’t not without hope. God gives us what we need and the great privilege sometimes of being able to look back at how far we have come.
I am aware lots have it lots tougher and sometimes it can feel hopeless as it’s so relentless but Jesus gives us hope and a promise of more to come.
Do share any of your ‘best bits’ too as would love to hear them…I reckon I could of got to 10 things!