Tressa is high maintenance right now. I have taken some pictures to give a visual. She is on the road to better days because we have answers now. Her blood sugar has gone out of control giving her body highs and lows which wear on people and also contributed to the tired days which when any of us are not at our best can be less than tolerable. Put PWS on top of diabetes.. Well she is on more meds..So much medication but if it helps I am biting the bullet and trying it all. Some life saving so necessary. We have blood level checks daily now and thank goodness in home help has arrived. Tressa has a behavioral support person to come in daily to work on strategies during down time, OCD and food prep. Tressa has a tendency to get obsessed with things here she can not stop unless intervention occurs and one can get hurt is not done properly. Even something simple like counting items..She gets into counting things. Also if she gets her TV on and sees Rachael Ray cooking EVERYTHING STOPS- she is going to buck any activity at that point. I missed the moment the other night while she was collecting her PJ's for bed she pushed that button..there she was big as life RACHAEL.... the tantrum started and i backed out of the way until she pulled it together as the Television was removed until the bath was complete... it is the most drama you could imagine..better than Hollywood. The behavioral person has her on a tight schedule where Rachael is in the routine AFTER she showers.. she does this and gets that..earning pennies to count when all is complete... For today this seems to be working. Everything has a place and time. She has dropped a pound since in home help arrived because this person is one on one to be at Tressa's side like glue. She takes her on walks while we have food cooking, to the park. She serves Tressa and sits next to her so the food Tressa eats is Tressa's. It in one week has shown to be one problem.because she is loosing so she was taking from the others..They probably didn't even know. Most people can never tell when she has swiped something. Also many many do not realize how many calories are in what we eat. As for her ABILITY Tressa has the sky as the limit for her if she can get behavior under wraps. She loves to please and this is rewarding for her. She loves books, can do math although has a block to wanting to. I hear it with her counting and she divides...adds, subtracts etc.. in counting sorting obsessively. Some how we need to curb that into learning time. Tressa has a strong connection to people. She is looking forward to going out to Seattle to visit her Birth family next month. She will do well there as it is about a week and she wants them to "like" her..They love her just her way to be a people pleas er it lasts for the week. In past we see the breakdown about at that weeks end so a positive visit it will be. It will be her and I this year so the siblings can have their time to re-visit her needs as they are older now and can comprehend more about the disability. I am hoping it is educational for them as this will be a great experience for children who do not have access to people with disabilities much.
Tressa is in the 1st grade general education with 1:1 for food safety on campus. She has had a rocky road this year and behavioral supports are being re-addressed in the school in conjunction with home. Consistency is going to be the key long term. She is learning although she tends to like being in "control" of her environment so this distracts her time she should be focused on learning education concepts. Most people who meet Tressa would NEVER BELIEVE she is anything but perfect... on first appearance... she is a charmer. very personable.
