When we were going through one of our many stints at CAMHS, I had a conversation with our then case worker. I told him that I was just so tired, and that parenting additional needs was just so hard, and he replied that it is hard, and it is tiring and nothing can really change that, and that was the end of that conversation.  I get where he was coming from, as parenting generally is hard and tiring some of the time.  When you factor into that a child with additional needs, or a child who is going through a tough time, or a child (or parent) who is unwell, ‘some of the time’ becomes ‘a lot of the time’.

However, we have finally got to a point where both our children are doing OK.  We are still riding the roller-coaster, dancing in the rain or making lemonade at times, but, and not a moment too soon, things are a little better. 

I keep asking why, what has made us get to this point? And I think it is because they have both reached a point where their additional needs are an integral part of who they are, and they have the coping mechanisms in place, and the support they need to allow the good side of their barriers, conditions or whatever you want to call them, to come to the fore.  Yes, we have days (& weeks) where they still need help fighting their battles, but they also have days & weeks where their amazing uniqueness shines.

Reflecting on all of this has made me realise that I’d like to go back to the case worker and tell him that he was wrong. That it doesn’t always have to be tiring and exhausting and hard.  One of the reasons why we pushed for a diagnosis for a condition that we knew was there was because we needed people to make reasonable adjustments so that we could get to this point.  One of the reasons why I have worked part time (often juggling multiple jobs working from home and going out to work to get an almost full time wage) is so that I can fight battles and help put coping mechanisms in place.  One of the reasons why I decided to write a book is to help others get to this point sooner that we have!

Don’t get me wrong – over the last week I have had conversations with an anxious teen at almost midnight, offering to sleep on the sofa in the lounge and I have slept on the teen’s floor, and last week I was answering texts relating to OCD style actions and consequence worries from our older one, but it’s not all hard work, and there is lots more laughter.  I can pick the battles I will get involved with, and let them fight some on their own.  They are becoming people who are not limited by their conditions, but also are not afraid to ask for help or changes if that’s what needs to happen.

Let me run that two key points past you again – they are becoming people who are not limited by their conditions, and more and more we are seeing them and their amazing uniqueness shining.  We have waiting a long time for this – as have they – and it isn’t as tiring any more.  If you are going through battles, hard times, bad weeks/months/years, and you’re exhausted, please hold onto this: it can, and it should, get better.