This week has been a challenging one for me, with really good things happening in equal proportion to really bad things, and not a lot of processing room in between.
On the good side, Rosie has taken to Floortime like a duck to water, and is thriving with this particular form of therapy in a way that takes my breath away on a daily basis. Today, for instance, I was able to attend Max's baseball game with her--admittedly, I couldn't watch much of it because I was trying to constantly redirect her from her one-woman demolition crew mindset, but I was there--more than I could have dreamed even 3 months ago. Then later today, she wanted some yogurt and, as I fed it to her, took the opportunity to drop a sloppy, open mouthed, drool-y, yogurt-y kiss on my lips between every spoonful. It was both truly disgusting and absolutely, miraculously beautiful. Last night, we took her to a noisy, chaotic school festival at Max's elementary school and instead of melting down, she walked up to a couple total strangers, got right in their face and said "hi!" Each of these are tiny miracles for us, and we directly attribute them to working our butts off doing Floortime.
Which brings me to the not-so-good...
When Floortime is starting to take hold with a child, they become--as "normal" children do--relentless in their efforts to get you to get up and play. All well and good, but with Rosie we have found that she is not redirectable the way another child might be--she is laser-focused on playing, and if you do not get up RIGHT NOW and play, a meltdown ensues. As a result, we are having 20-30 small Floortime sessions a day. Incredible for her, exhausting for me. To constantly be in the act of trying to engage and interact with someone like Rosie requires a high level of active thought, active movement, high energy and creativity. "Downtime" is no longer much of an option, since her naps or bedtime are the only times I can squeeze in time with my other children, cleaning the house, reminding my spouse what my name is, and cooking the occasional meal. I am realizing this level of intensive therapy is IMPOSSIBLE without a team effort of core people to help--which I currently do not have and desperately need.
On top of this, Rosie is not sleeping. Sleeping difficulties are very common for girls with Turner Syndrome as well as for children with sensory-related issues and autism, and Rosie is definitely the poster child for insomniacs. She has periods of sleeping relatively well, but the slightest change in environment or health or...anything! will lead to weeks of interrupted sleep patterns. Currently, she has been waking up between every 3-5 hours at night in a hyperactive state, wanting to stim and play and run around in circles. I am in the process of speaking with my pediatrician to see if Rosie might benefit from melatonin, which research suggests might be at lower levels in TS girls. Some girls respond beautifully to the treatment, others not so much. Fingers crossed that Rosie is one of the responsive ones, because I don't know how many more 2AM Floortime sessions I can do!
I have a 5 year old daughter that has ASD and at one point, a severe sensory disorder. Wendy gave me the link to your page and I just wanted to offer a little of my knowledge. Have you been introduced to brushing and joint compressions for her sensory issues? You might also want to look at weighted blankets. My daughter Brinley has been in PT and OT since she was 10months old and she has made remarkable progress. She has also been blessed to be in a great ABA therapy school. I don't know if you have anything in the ABA realm in your area, but it is a great treatment for autistic kids. Good luck with your challenges, and God bless.
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