Wednesday 26 October 2011

When going to A&E is actually ok...

Most parents don't go to A&E much, but we are there quite often. Unusually on Sunday our trip to the hospital was so 'normal' that it was almost good. Little monkey had been free-wheeling down the hill on his bike getting faster and faster. The only problem is, he doesn't know how to use the brakes. Quick as a flash he'd lost control and flipped over the handlebars, face first. One look at the great big gash on his chin and I knew we had to take him in. Once there, with pain relief administered he soon calmed down and we settled into the kids room for the interminable wait to be seen. But as we got bored and frustrated at being made to wait with a blood-stained child, it actually occurred to me that this was a rather good trip to A&E. Normally we enter through the ambulance bay doors, having come in on Blues and Twos. Normally he's wired up to a heart and BP monitor, with an IV in his arm and a tube down his nose. Normally he's unconscious and doped up to the eyeballs on various different tranquilizer drugs. Normally we have to spend several hours in the children's ward while he recovers. But this time it was what other people would call normal. He was going too fast on his bike, just like any other little boy. He fell off and cut his face, just like any other little boy. And we waited a whole hour for a 3 minute procedure, just like any other family. Sometimes it's ok to go to A&E, because it reminds you that he still does normal things and he's just a kid after all.

Saturday 22 October 2011

Stuck in a dilemma between medication and behaviour

These last 2 weeks have been emotionally fraught and we feel like we're trapped in an impossible situation. Little monkey had a very long, dangerous seizure in July and since then the doctors have been trying various medications. But it's taking its toll. At school they've had a series of angry outbursts where he's lashed out at staff and children, scratching, biting and kicking. They've had to adjust the staffing to cope because there has been a huge increase from last term.

So now we're stuck between wanting to have his seizures stopped because they're potentially life-threatening or living with him lashing out every time he gets cross. Luckily for us he is a great special school and they are being very supportive. The consultant wants us to give it another 4 weeks and see if it settles down. The drug does seem to be having a positive effect on his epilepsy, but can we handle the side effects?

Monday 3 October 2011

When special siblings make you cry

"I want to die" she said softly to me. She's 8 years old and has been living with her special needs brother for as long as she can remember.

She's said it before. Last time I called in the children's mental health team. They did a load of work around worries and it went away for a while, but sometimes it comes back.

This time, though I decided to deal with it differently. Instead of being rational, sensible, explaining the finality of her statement, I decided to let her see me cry. Not to make her feel guilty for saying it, but to really let her know how much I want her to be here.

"You're so busy with him," she says, "if I wasn't here then it would just be easier, you would have more time." She wants to die or to go and live with another family, at age 8 perhaps these two things can seem interchangeable.

I tell her that no family is perfect, that wherever she goes there will be problems of some kind, that she is really loved and fortunate in many ways, that I want her to stay and it upsets me to hear that she wants to leave us.

Finally, when we are both in tears, she stops hiding her face and jumps into my arms. "I'm going to stay now," she says at last.

Special siblings. They tolerate a lot, they cope so well. But sometimes it has unintended consequences, and sometimes we both cry.