Today is one of those days where I don’t feel like writing a proper blog entry. Which probably means I should go the extra mile and do it.
Fable is so poorly and I’ve barely had the opportunity to see her all day. Every spare minute has been taken up with Sonny. Daddy is in charge of the sick baby. I’m in charge of the highly exuberant, easily bored, supremely stubborn Sonny boy.
He’s been mostly in a good mood which makes all the difference. I took him out with Lesley (his old respite carer and good friend of mine –previously mentioned) It is 100% necessary for me to get him out of the house at least once a day for a few hours for both our sakes.
Every room in the house has to be gated off for his protection (and the protection of anything breakable!) So he spends the majority of his time in his bedroom, which is kitted out for him like a sensory room. Flashing lights, chilled out music, his special needs bed and tons of Sonny-friendly toys. When he is let out of his room around the rest of the house it is with constant supervision. You have to be by his side the whole time. Sonny has no boundaries or sense of danger. He throws everything he can grab. Getting him out of the house, in the car, or on the bus is respite for me with the added benefit – he LOVES being in a moving vehicle.
I find it really hard to deal with Sonny being unhappy. Maybe my co-depenedcy is at play but I think in this circumstance, it’s different. If Sonny is displaying as anxious or unhappy – crying, screeching, throwing things, picking his gums, biting his hands, twitching violently – it could be anything from dirty nappy (diaper) to actual pain from his hip dysplasia. Often, there is no apparent reason for his unhappy outburst and due to being non-verbal, I haver to make an educated guess. I wont lie – over the years this has been my biggest source of anxiety. I want him to be happy and pain free. Obviously. But sometimes nothing works except getting him outside.
Whenever I get to the end of the day and Sonny is chilled out in his room, having eaten his meals, been outdoors and seems happy, it feels like a massive achievement. I feel like I can do it all again tomorrow.