Stress is something no-one truly understands quite like the parent(s) of a disabled child. You can be in a totally normal situation – everyone is happy and having dinner, or you’re wandering around the shops then BOOM something triggers the mother of all tantrums and there is nothing you can do to stop it.
Jude has a lot of tantrums. They can be for things where you think…”well ok fair enough, that would make me want to cry too” but they can also be for nothing. Literally what appears to the average person as nothing! One morning a few days ago, I heard him awake really early, like about 5am. He was still in his bedroom but he was chattering to himself and throwing things around his room which is never a good sign. I lay in bed and listened to him stomp around his room and then out into the landing and downstairs towards the kitchen…I knew where this was going. Jude is a food thief. We used to hide biscuits in the microwave as Jude couldn’t open the door but now he’s mastered this, we have to put them somewhere else (if I told you where, I’d have to kill you.) Anyway, I made him go back to bed and surprise surprise, he lost the plot and started shouting and crying.
So how does this make you feel as a parent? Pretty bloody awful, for many reasons. Firstly, it is just so draining. Constantly trying to predict behaviours, intercept possible fiery scenarios, treading on egg shells when they’re having a bit of an off day, calming screaming children. That last one is impossible by the way. Until Jude is nearly out of the tantrum, you may as well leave him to it and quite often nowadays I do. He’s a big boy! At 10, despite being a wiry little scrawnbag, he’s pretty strong. I can’t carry him or stop him hitting out so the best thing to do is get him into his room and leave him to yell for a while. 99% of the time, once he has finished screaming, you can go in and he is the loveliest child ever. It’s so strange. You can even have a civilised conversation about what he has just been doing or saying and he’ll admit that it’s not nice but I really don’t think he can help it.
So how do parents cope? Especially single parents of disabled children or those who have little support networks around them. I’ve had times where I don’t think I can carry on and times where I have no idea how I’m going to make it through the next few hours, let alone years but I’m lucky in that I have a great family who help me with Jude as much as they can.
Mental health of parents of disabled children is a huge area of research that seems relatively vacant in terms of information (I may be completely wrong on this front but I couldn’t find much, meaning it’s at least not very accessible). I found one article from 2004 that suggested mothers of children on the autistic spectrum (ASD) experienced higher levels of psychological distress than mothers of children with other developmental disorders. I guess this is because of the nature of ASD; it’s unpredictable to a certain extent, it’s all consuming and can leave you feeling entirely drained at the end of each day.
I looked up organisations that support parents of disabled children as I really think this is an area of policy and development that is completely ignored by the government.
http://specialkidsintheuk.org/our-story/ is a great charity that supports the family around the disabled child through respite care, information, helping to make a decision about schools, therapies, etc. Have a looky…
A second one is this – http://www.parentsofdisabledchildren.co.uk/index.php which is a forum type website, giving parents the chance to make contact with other families in similar situations.
There is also Contact a Family http://www.cafamily.org.uk/what-we-do/ – they campaign for better living situations and for a more inclusive society and also give advice to families and attempt to create connections between families so they can support one another.
More help and guidance needs to be given to parents of a disabled child as I imagine a large amount suffer from mental health problems and severe stress. I’ll have a more detailed search, see if I can find any interesting research articles on the topic.