My two big worries approaching this intervention were Mike’s sensory sensitivies and vomit! Believe it or not vomit is a big part of Mike’s sensory problems. As well as the senses we are familiar with, for example sight, hearing, touch; our ability to self-regulate also forms part of our sensory world. Continue reading
So today Clarissa arrived and sprung something new: Mike is now ready to normalise his eating pattern. Normal, eating and Mike have never appeared in a sentence together and I’m pretty daunted by the latest task I must admit.
I always had in mind that even with Clarissa, Mike would be a, shall we say, more selective eater? Today’s discussions tell me the opposite and I’m so, so excited!
The whole ‘packing’ episode hit me at a point in time, that my mind was unpacking my life over the last 27 months. It hasn’t been ‘like magic’ in fact, it’s been pretty grim.
I’ll never forget 24 hours after leaving hospital, arriving back on the children’s ward for Mike to start on antiviral treatment. The painted Mickey Mouse on the walls, the big smiles from the nurses: my mind collapsed and in a second, had to pick itself up again. I remember at that moment, there was no room for self-pity or anger anymore, my new born was starting on chemotherapy like, toxic drugs and really there couldn’t have been much worse to throw at me.
So the chicken went down well initially and then all of a sudden, Mike stopped swallowing. He completely disengaged from me. No sound, no attempt at eye contact, no crying. He just stared and stared and stared in to space. I had to sit and wait initially in line with the technique, for as long as it took for the food to go down. Clarissa explained the correct term for this was ‘packing.’
Any mum of a child, born with a health condition, will tell you how strong her instinct is to protect, it helps her baby survive. As mum of a poorly baby, you are forever parenting in situations that are frightening and new to you, often this makes you unsure of how best to be ‘normal’ with your child. In all honesty, what’s normal about endless appointments, a host of professionals aware of every aspect of your life or having to put your child through all sorts of medical procedures and treatments?
