I went to the feeding workshop for the second time. As usual, Illyana doesn’t really fit into a category or box. She is between a problem feeder and a picky eater. They gave all these great ideas for picky eaters. Except we have spent a year implementing these ideas. When the feeding team asked at the end how it was taking it for a second time I said that it was interesting because we have different challenges now than we did last year but we still have the challenges. I then burst into tears. Illyana basically didn’t eat for 2 months and no one really has suggestions on how to help her through that. How to help me through that. We have this massive team, which is amazing, but at the end of the day, it’s just us on the ground. And I feel like we are failing. Please don’t tell me I’m not. I know I am not but it doesn’t change the feeling. I know it is a daily thing and we rock it a lot of the days. And I know she knows she is loved. Love is not lacking around here!
Someone told me that as a helping professional looking at an autism assessment, my world is going to shrink. They were absolutely correct. There are support groups in town for parents with children with autism. The majority of these families have a file in my office. How do I go to those groups? Neither those families or me will be comfortable. Also how do I stay just a mom when they know where I work? I am there for my own struggles not to work through other people’s based on my job. I know of several professionals who have children with autism who I hope I can lean on.
I submitted an application(?) for a private clinic. They have a pediatrician and the psychologist. It sounds like we might see the pediatrician in a couple months and the psychologist in the fall. I need to get a referral from our doctor and I can’t see him for 2 weeks. But I also talked to NHAN and they said they can’t test until at least 30 months. They are trying to pilot a program to streamline toddlers but I didn’t understand it was a thing yet. We also won’t get into NHAN until the Fall of 2022 with the current waitlist. I don’t really know what to do about it all. I guess we see the pediatrician and see what he says. 30 months isnt that far out. September 2020.
Our Occupational Therapist, who we are on a waitlist for a sensory profile, is going on maternity leave next month. This is something that I think might actually help us. I need to look into private OTs and see what we can do for her that way. Maybe if I knew what her sensory challenges are we could work with food better? It’s very possible that there are no answers for Illyana but I feel like I need to do something. If I wait and she gets an autism diagnoses, private professionals will be included in her funding and we wont have to pay out of pocket, but if it actually helps is it worth waiting for? Do we pay for everything? Do we wait and see?
Everything feels so overwhelming and I am so tired. And I am just having a hard day.
