Being a parent is a difficult job and one for which we really receive no real training, other than observing our own parents practice on us. But then if you intensify that experience by being a single parent of a child with special needs, then you have a really demanding role. You are the only one who your child turns to when they are ill, when they cannot sleep and you have to be both good cop and bad cop, all rolled into one.
It is already a lonely experience being the only one up at 3am dealing with a child who will not go to sleep, has just had a seizure or has a raging temperature. But if there is nobody else at home to either share that burden, to sympathise in the morning or to know that they could be woken up in an emergency, that would be a different prospect. Last month, Joshua had a seizure in the afternoon and I ended up lowering him to the floor to be safe and so I was pinned underneath him while he recovered. As he went into a deep sleep, I realised that I was stuck unless I rolled him off me and I really did not want to disturb him. I called for my husband to help to lift him gently onto the settee to recover in more comfort, but as he was outside, he did not hear me. He returned eventually, and did as I asked, but in single parent families, another solution would have to be found.
While I usually handle the wakefulness overnight in our family, I have always said that I cannot have two consecutive ‘all nighters’ so that my husband is called upon on the second night to step up, even if it is just some of the night. Ordinarily it does not arise so he is off the hook. Night-time cover can be the biggest problem,but that is not the only time that I would miss having the back up of my husband. Shopping is not an activity that Joshua enjoys most of the time and he makes it pretty hard work if he will not cooperate. Therefore I often go to the supermarket without him, either leaving both boys asleep in bed at 6am when the store opens or at weekends, Joshua can stay at home with Dad. It should not feel like a luxury to be able to go to the supermarket childless, but it does, as the whole ordeal is simpler and faster without having to use those supermarket wheelchairs with the awkward trolleys that attach to them.
The hospital appointments that we have attended where it has been so useful to have another set of eyes and ears, either because Joshua has needed distracting so that one parent could concentrate on the consultant or because of the enormity of what the Doctor is saying, that one brain cannot take it all in.Even though I was told Joshua’s diagnosis when I was on my own, at least I knew that my husband was on his way, and that he could help to piece together the devastating news and we could face the future together. Life would have been very different if I had been a single parent, for sure.
So as Valentine’s Day has passed for another year, I reflect that for me it is not all about chocolates and flowers, but it is about supporting one another through the rollercoaster of life and certainly having children with special needs is certainly a bumpy ride!