During an early “what can we expect?” conversation with our paediatrician, he warned us that many children with developmental and neurological problems, like Lil Z, will have behavioural issues. This, he said, stems mainly from the fact that Lil Z will become frustrated as she won’t be able to do everything that she wants to be able to do.
Lil Z, however, seems to have struggled to control her emotions from very early on. Looking back now, its hard to tell what caused a lot of her crying – my theory is that it was seizure activity that we were missing – but she could scream for hours on end. And once she started crying, it seemed impossible for her to bring her emotions back under control.
This was a huge source of frustration for me in the early days of discovering her developmental problems. My baby had developmental delays and I wanted to do something about it. The one thing everyone told me I could do, which that would make a difference, was physiotherapy (and occupational and speech therapy, but for brevity’s sake, I’ll just call it physio).
So, I managed to arrange for Lil Z to see the “Dream Team” at the RCH. They were fantastic – a wonderfully supportive, knowledgeable, kind physio and OT team. However, every session, they would do one thing with Lil Z (it didn’t matter what, it could be a physio position or it could be sensory play) and she would start to scream. And she wouldn’t stop. Trying to get her to do anything else was generally a waste of time because she wouldn’t stop screaming. So, most sessions with the Dream Team ended up with me breastfeeding Lil Z to calm her while the therapists recommended some activities I could try at home.
At the end of around 8 months of sessions at the RCH, we’d never made it through a single session without a total Z meltdown. I was gutted. Everyone was telling me that the most important thing I could do for Lil Z was focus on therapy, and yet, I couldn’t get her through a single therapy session.
We were referred on to FECS, where we were fortunate enough to get more fantastic therapists. It made no difference to Lil Z – she still screamed and cried throughout her sessions. I was beginning to feel desperate – time was ticking away. Everyone emphasized how important it was to do as much therapy as possible when they are little, and yet our therapy sessions did little more than exercise her lungs.
And then something clicked.
And suddenly, she can cope better. She still doesn’t like doing physio, but she can stop herself from completely losing the plot… most of the time. She made it through a whole hour-long session with her FECS physio – who is incredibly gentle, slow and calm with her. We had to take regular breaks for her to get a comfort cuddle from me, but she could then rein in her emotions and carry on with another exercise. And she showed her displeasure at being put into new positions by grizzling and grumbling, not by screaming.
More surprisingly, she has coped with her private physio, who while being equally lovely, puts her through her paces much more energetically. But even this morning – when she had a half-hour cry before leaving the house and then fell asleep in the car on the way to the physio – she coped admirably. Grizzled throughout, but was in control of her emotions and paying attention to what the physio was doing and saying.
This is big stuff. Being able to control her emotions means she doesn’t have a meltdown during physio. And being able to get through a physio session means she is beginning to make some progress. It’s still progress by inches rather than miles, but at last I’m beginning to think it wouldn’t be impossible for her to be sitting independently by the end of 2013. That is something I hadn’t expected, even at the start of the year.
Of course, this doesn’t mean that it is all easy street from here. Lil Z still isn’t able to cope with new situations or places, noise, or chaos. Which means that our weekly visit to the ECDP playgroup at Red Hill Special School is fraught with crying, ear scratching, and burying her head in my shoulder. But after the success with the physio, I now have some motivation to persevere with the playgroup. It may take her some time, but hopefully that will click with her, too.