Thursday, 25 June 2015

Hopes and fears.

Last week marked three years since River was diagnosed with autism. I had a read through some of the old blog posts from around that time, including this one from the day he was diagnosed and can't believe how much he's changed. There are many things that, when on paper, make it seem like our fears were unfounded and could probably give the illusion that we can now rest easy, breathe a sigh of relief. At the age of nearly five, he's fully toilet trained. His speech is pretty good. He can communicate his needs. He has the most incredible memory. His reading ability is incredible. He's pretty hot at maths. During 1-1 lessons at school, he remains seated and fully focused for a good 20 minutes.  He's spending about a third of his school day with his mainstream class. But their is more to a child's development than that.
As he gets older, new issues arise. He has never been a violent child, but lately he has been constantly slapping, grabbing or being generally rough. He knows it isn't nice, that it hurts, but he doesn't understand what "why" means so can't tell us why he's doing it- and probably doesn't know either. When he doesn't have a very structured activity to focus on, he is really hyperactive and very noisy. He will run up and down, making a constant groaning noise that he is seemingly unaware of, and will chew anything and everything. He's quite keen on chewing on my sandal straps, Tim's Crocs, the plastic cover on my phone. He operates at 100mph, all the time. It's exhausting.
He has no sense of danger. That includes the dangers of chewing on (plugged in) phone chargers and similar wires, running into roads or in car parks, or asking random strangers their name and age.
For the first two or three years of his life, he was an amazing sleeper. He was That Baby who slept through from 6 weeks, self-settled, and had consistently long daytime naps. Then as his mind got more and more active, he lost the ability to switch it off. Sometimes he sleeps brilliantly, but more often than not he will take at least an hour, sometimes two, to fall asleep (he currently lists-out loud- the ages of every person he's ever met, in numerical order, each one repeated twice. For example: "Dylan is 1, Dylan is 1. Ollie is 2, Ollie is 2. Coby is 3, Coby is 3" all the way up to, "Keith is 70, Keith is 70. Pops is 71, Pops is 71..." Dylan was a baby he saw briefly in our doctor's surgery. Ollie is a friend's child he's met twice. Coby was a boy he knew at preschool. Keith is his old taxi driver.) Somehow,  he just remembers all of this stuff and then needs to process it before bed.
Then he's often awake for a couple of hours in the night. He doesn't need us, he just chats to himself and sometimes walks up and down his bed, but it obviously keeps us awake.
He's understanding and interaction is still really poor. It's certainly improved a lot, but you can't have a conversation with him.
We of course hope that these will all get better- we've often thought, "will this ever change, will he ever learn xyz?" and before we know it, it's no longer an issue. But it's not guaranteed, and the "What if's" can be hard to block out some times.

River's biggest challenge, however, is coming up in a few weeks. We are having a baby, and River's world is about to be turned on it's head. He sort of understands what is going to happen but probably doesn't understand how permanent it will be.
People ask all the time how I think River will be when the baby arrives, but something that I think about more is how we as parents will cope- in two different senses. Firstly, I worry about how we will cope practically. Every parent adding to their family wonders how they will juggle each person's needs and how the family dynamics will change, but when you have a child with special needs it's a totally different ball game. The baby is due in the school holidays, so we won't get our usual respite when River is at school. We also don't have much practical family support close by, so it's going to be intense!
Secondly, I worry about something very different to most parents adding to their family. It's really common to hear expectant parents say, "Will I love this baby as much as I love my existing child? I can't imagine loving anyone that much."
I love River unconditionally. Autism can push you to breaking point, and if you don't break, it's safe to assume that love is pretty strong. But there are certain aspects of parenting- certain lovely aspects- that we don't get from River. He doesn't cry out for us in the night. He doesn't want us to comfort him when he's sad or scared or hurt. He doesn't want to kiss or cuddle us or tells us he loves us. He will give us a kiss when asked, but there's no affection there- he's just following an instruction, like bringing me his shoes or touching his toes.
So what happens when this new baby wants cuddles and kisses? When she holds on tight to us when she's nervous? When she wraps her arms around my neck and says, "Love you Mummy" - when she offers us all of the love and affection that River isn't able to express?

What happens if I start to love her more?

Maybe that makes me an awful mother for even considering that it could happen. But it's a very real fear. I'm assuming that I will love her equally, just differently, just as most parents with more than one children do. But no one can tell me for sure, and I'm so scared that I'll let River down by not loving him enough, because someone else has come along who gives and receives love easier than him.

2 comments:

  1. This might help you:

    http://wearelikeyourchild.blogspot.co.uk/2014/05/a-checklist-for-identifying-sources-of.html

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  2. What happens if I start to love her more? You'll just know the answer if you will do it. Thanks for sharing.

    ReplyDelete