I woke up this morning feeling a little chilly, realising I had only a corner of the duvet covering me. I didn’t want to yank it off him and wake him up, he looked so peaceful, God knows he needs it, so I rolled over into the available section of duvet to get warm and have a gentle cuddle whilst I watched him sleep.
Obviously, I’m not talking about my husband, there’s no chance he was keeping the duvet if he had shameless stolen it from me! It was my little boy. Patrick has had a difficult few weeks with his levels of anxiety. Many Autistic people suffer from high anxiety and Patrick’s is diagnosed as severe.
On the whole he is coping well lately, but he has been finding everyday things increasingly scary and his reactions have been increasing. I am learning every day the struggles it brings him.
Last night he had an anxiety attack that was painful to watch and no doubt painful to experience. What I struggle with most about the anxiety Patrick suffers is the lack of control it brings, not for him (although I hate that too, I am always there to support it), but I hate the lack of control it gives me to soothe my little boy.
When he was a baby, being a breastfeeding Mum I could easily soothe him when he needed it. As he got older cuddles, a kiss better and a lollipop always did the trick. But the older he got and the more anxiety gripped him, the harder it became to soothe him and no parent wants to fail their child on any level, least of all at keeping them feeling safe.
As a parent or a person that cares for children, be that; teacher, an SNA, health professional, you know that loving a child and caring for a child is about so much more than everything they see. It can be the three-hour meeting you attend to discuss their schooling plan to ensure schooling doesn’t overwhelm them.
It can be the thirty hours, many of them lying awake in bed debating with yourself if you have made the right plan to support them and you impact if YOU have got it wrong. It can be the research of every book, program, sensory toy/experience that could make the slightest difference to their wellbeing.
Or the letters, emails, voice mails you make to the various professionals, politicians other Carers to try and make the Carer support that you offer as hassle free as possible, not for you – but for your child, for all of your children. So, you can be with them if not physically with them supporting them from afar in everything you do.
This week, I feel immensely proud that my name got raised by a TD (MP) in a National Covid support meeting for the advocacy work that I have been doing for Disabled Persons and Carers rights – I also felt a little vindicated as I worry my husband thinks I spend so much time on my hones just playing Candy Crush or reading Waterford Whispers, I’m not (well not Candy Crush anyway) I’m advocating constantly in one way or another.
But the bottom line is, when all of the paperwork, research and support plans are complete. When your child stands in front of you screaming in emotional pain, that manifests as actual physical pain causing them to bash their head off walls to get relief, you feel like you are failing at the most important task you have as a parent.
But when your child is at the height of a meltdown, or an anxiety attack or anything difficult they are dealing with, your own feelings need to stay pushed down inside as best you can. That is what I have realised is the most selfless act parents do for our children.
Our feelings do of course matter, but at your child’s darkest moment, their feelings matter more. Their feelings need to be dealt with ahead of your own in whatever way you are able.
Giving up your duvet to your child is never a big thing, most parents have woken u o shivering with a toddler toe dangerously close to your nostrils, or proving you are parenting royalty by waking up on a bed of beanie boos, lego friends or dinky cars.
The small corner of the duvet you are happy to accept, represents giving over to your child’s needs ahead of your own knowing it is part of the parenting contract you enter when the midwife hands that bouncing beauty to you.
Every parent knows, you would sleep outside in a Siberian winter if you could take away your child’s pain and as crappy as the support ‘systems’ we face are, the biggest trauma comes from your child’s pain.
It is vital we remember that we are the best medicine they have, we may not bring any evidence based, clinical benefit, but YOU are the best therapy they can receive. You are their calm space, their safe space, the big duvet that wraps around them on the coldest of moments. You are 15 Tog, duck feather GOLD – and don’t you forget it!