Today was technically day 1 of feeding therapy. It went much better than last Friday, but again, it was me feeding her for 3 out of 4 sessions. They wanted to see how she ate for me, the verbage/prompts I used, the reinforcement needed, how much she ate, etc. She burst into tears the minute we walked into the therapy room, but when she realized I was staying, she was fine. She ate great! It took a lot of singing, goofing off, and positively redirecting her to keep her on track, but she ate a lot (for her) and was happy.
Session 4 was another story. The therapist came and took her from the playroom without much preamble as to where there were going or who she was or anything (they really don't do much to establish repoire here - they just get on with it) and the minute she took her out of the room, Ruthie burst into tears. I think a little explanation beforehand might have helped a lot, but what do I know? I'm just her mother.
This therapist, while well-trained, I'm sure, has the personality and pep of a pet rock. She's a nice person but she has no "oomph." And Ruthie needs a lot of "oomph" to make it through a 45 minute session successfully. They started her on blue and red cards today, and while at some point the therapist explained the cards to Ruthie, she was so busy crying she never heard any of it, so it was pointless. (This is another area I feel they could budge a little and not be so clinical, but again.....I'm just the mom.) The blue card means Ruthie has the choice as to whether or not she will take the bite. If she does, great - she gets praise (in a manner of speaking.....we're going to work on that tx's oomph-level.) If she doesn't, she gets total silence and ignored for a few seconds. It sounds rough but....well, it is. It's supposed to teach her that while the choice IS hers, she needs to make the right one and take the bite willingly to get the reinforcement she wants. She didn't take any of those bites.
The red card means she does not have the choice. The bite is presented and held at her lips until she takes it. If she fights (and she did), her arms get pinned down and she ends up taking it. She absolutely HATES being held down and always has (remember, NICU nurses? It was impossible to keep that tiny 1-lb frame in the "nest") and she went ballistic when the tx held her arms down. She did eventually take the bites but she was crying so hard I'm not really sure she learned the point. She does SO much better if she's just nonchalantly told to take a bite and you accept no nonsense until she does - without holding her down or ignoring her afterward.
I AM trying to stay positive and look toward the end goal of this therapy - I've done ABA and I know what it takes, but the way they go about it is different. I know my child and I know what works, and I (unfortunately) foresee a lot of crying. :( Probably for Ruthie, too. ;)
The big shocker of the day came via the social worker when she announced that, even though Ronald McDonald house promised us a place, Ruthie's case is evidently not priority for them and as new applications are coming in daily, we are going to the bottom of the pile every time. That is the most unfair thing I've ever heard - who gives them the right to decide whose family is more important? While I most certainly understand immediate priorities like NICU/PICU cases, they have NO right to judge who is more appropriate for their rooms. It is none of their business, really, why we're here - their mission is to accommodate families in need. We are a family in need for 8 weeks. We are just as able to pay the $20/night as anyone else. We called in our reservation just like everyone else. We were told we were 4th on the waiting list - and now the house manager is saying that employee shouldn't have said that and she doesn't consider MAC families in need. My momma heart is so angry that she would dare say my child's situation isn't important when she has no idea what she's been through to get here. She is JUST AS IN NEED as anyone else who is waiting for a room.
All that aside, I'm pulling out every single stop I can think of that may have some pull with this situation. We are lucky to know a lot of people who know a lot of people, and I'm determined to get her in there, because that is the best place for her. The social worker is determined to get us to go back to the Atlanta Cottage when we've made it clear it is an unfit place for a busy toddler. There is nowhere for her to play - no playroom, playground, or even ROOM to play. Our tiny little bedroom could barely fit the 2 single beds and her packNplay, and she's supposed to live in that for 8 weeks? Not happening. We shared a bathroom with another room, and got locked out of our own bathroom all night b/c the other person forgot to unlock our door. There were doors slamming all night long. The room was boiling hot. The fire alarm went off at 5am and the house manager was unconcerned - simply said it had a short and did that all the time. Great - so should I just assume when it goes off that it's the short, and just wait until I smell smoke to get my lung-diseased preemie out? No thanks.
It's been an emotional few days. I am very upset about the RMDH issue and I won't stop until she's either in or we're done with this program. The social worker encouraged us not to bother the RMDH house manager b/c, evidently, the MAC is on thin ice with them in the first place. Not my problem, and I would expect a little more of a helpful attitude on behalf of your clients.
Here's hoping for a better tomorrow. More eating, a lot less crying, and an open room (with an open heart) at the RMDH. :)
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