The beginning of this week was a rough one for me. Carl was gone all day Sunday and while I did have some help and some breaks, it was still a long day. In general I wasn’t handling it well when the girls would fight over toys nor was I very relaxed about all of the times when Amy wanted things done in a very particular way (not always made clear). On Monday, after Sonia left, all of this culminated during a trip to the back yard. This is normally an easy, relaxing way to spend time. Not this time. Amy wanted a doll stroller and then Sarah asked for one too. Amy had them both at the door and then decided she wanted the pumpkin baskets. I helped her carry the baskets down the back steps. Then I brought the stroller with the baby doll down the steps too. Wrong move! Amy was insistent that she be the one to bring it out of the house. So I took it back and let her bring it out. Then she got interested in the empty stroller and Sarah took the one with the doll. Oh no! That was not what Amy wanted. More crying and screaming. Sarah switched to the empty one and I helped Amy with the stroller doll combo to go down the stairs. (Just what I had done to begin with? Indeed!). Amy continued to be upset about something and climbed the stairs without the railing, almost falling when she reached the top but denying this fact vehemently when I pointed it out. I was not at my most relaxed or expansive for all of this. On the plus side, because of these interactions, I happened to be by the stairs when Sarah started to bring her stroller down, something she normally does easily and well. This time something went awry and she started falling with the stroller. Luckily I was there, so I caught her, but she still got a cut lip (probably from a tooth) and was bleeding notably. I yelled loudly enough for all the neighborhood to hear that we were done outside and then I tried to pick Amy up by her coat while carrying Sarah, resulting in dropping Amy back to the ground, which was only an inch below. We managed to get in, with me feeling like a wretched parent and feeling like all my neighbors would think I was terrible. The blood flow subsided. We proceeded to watch dvds for the next 2 1/2 hours until Carl returned because I just didn’t trust myself to not yell more if we weren’t all calmly contained.
It was at this time that I called my mom and had a good cry and then sent out my email SOS. To all of those who responded, thank you so very much. (And if you didn’t respond that is ok too – and it’s not too late! It is always helpful to get positive feedback). I know in theory that I am responsible for my own happiness, but it certainly helps to have tangible love pouring in. On my good days I know I am doing a kick-ass job. On my bad days then nothing I am doing will ever be enough. I caught myself with a belief I didn’t realize I was carrying: that if I was really doing enough then Sarah would already be normal/well/able to be in a typical school without any assistance/etc. Seeing that belief and declaring it is crap helps, but I think I am still believing it somewhat. because of the other insidious belief that if I am really struggling then that means I am an even better mom and person. Or that feeling like I am not doing enough will help me do more. ugh!!!!!!!!!!!!!!!!!!!!!!!!!! argh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have times each week and each day that I am not with the kids and even times that are really just purely for fun. I think perhaps I could increase the amount. Somehow I trap myself into thinking that whatever small amount I give myself ought to be enough and that something is wrong with me that I am still struggling or want more. My aunt made a comment about my self-care limitations, saying “bull$*(!. you need some of that with every minute. with every breath.” Amen. With a lot of what I do with the girls and with Sarah, I am truly having a lovely time and it is exactly what I want to be doing. It is just that then sometimes I want a break and don’t give myself one either because of necessity or stubborn denial of my limitations.
When I think about my long term goal for Sarah and how much I want for her to be able to do whatever she wants and live a happy, independent, connected, love-filled life, then I think I must do everything in my power to help her get there. That means I must do Son-Rise and Becky’s full program daily. And be happy and relaxed and take care of myself so I can be there for her. And spend quality time with Amy. And always have a plethora of nutritious food options available. I am now coming to the conclusion that there is perhaps actually too much to do, even with all the help I have, and that for me it might not be possible to do it the way I think it ought to be done. I am not a null factor. I have to have time for me even if that means not getting in some of the Sarah stuff. I feel disappointed that I can’t do it as powerfully and fully as I think would be most effective. And at the same time there is a bit of relief in admitting defeat and just aiming to do most things most days, allowing that some things just won’t happen. This week I have started going to bed earlier, giving myself time to read and wind down. This means the house is messier and I am more behind on other things, but I seem to wake up feeling more refreshed with more space for the girls. It is my intention to stick with the earlier bedtime.
In Sarah news, Sarah continues to amaze me with the table top toys. I am hoping that all of the practice with shape matching and manipulation will help forge new neural pathways to make other similar challenges, such as jigsaw puzzles, easier. She is also doing almost all of the movements to the musical component. She is totally into practicing letter tracing with hand-over-hand assistance.
For the past several weeks Sarah asked Amy almost every night if Amy would let her wear the bug pajamas. The answer has always been “no” until last night! And then Amy happily said yes! All of her own accord!! I am pleased with how we handled this whole situation, encouraging Sarah to ask and allowing Amy to have control over the pjs. It was good practice for asking for things and the perseverance paid off. With Carl’s help Sarah then said “thank you, Amy.”
We are still moving very slowly with adding foods to Sarah’s diet. The newest was cocoa powder. I made brownies yesterday and she was extremely excited. This was her first chocolate in roughly a year. She only got one serving and she handled that restriction beautifully.
Last night we had a small team meeting. It was wonderful. It felt profound, fun, and productive. We talked about how Sarah has changed, how we have changed, our long range goals, and the small steps to take now in the direction of those goals. Then we made story board pieces for helping Sarah learn to have introductory conversations. Each drawing is on a separate card so that we can make more cards and play with the order. Carl is our nominated artist and I am delighted with the drawings (stick figures with personality).
My love and appreciation to all of you. Knowing that you are witnessing our journey really truly makes a difference.
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