If you don’t know – I’m a homebody. I like my home. I like being home. I generally prefer being here to anywhere else. I can keep it predictable here. I can establish a rhythm here. My kids are most likely to be calm here. I know where everything is and it’s all mine. It’s just lovely to be home.
This new year is likely to be a highly medical year – professionals out my ears. I need professionals. I appreciate professionals. I admire and am glad to be able to hire professionals. But I would much rather, without a doubt, do things on my own. I like being the boss, for one. I don’t like multitasking or incorporating new information (you know – like learning new things or adjusting my natural rhythm.). I know this is a bit whiny, but I’m just being real, y’all. It’s also really tiring to explain myself to professionals who aren’t aware or informed about the whole of our family dynamics. Cardiologists are rarely also trained in autism. Occupational therapists are rarely trained in trauma. Counselors are rarely trained in developmental delay.
I don’t mind being a teacher much at all, but I find that advocating for myself and my kids does get to me. (Teaching is where a professional is interested in understanding a larger view of my child’s life. Advocating is more like me arguing with a professional about what he/she doesn’t know about my child.) I get fatigued quickly (on a mental and emotional level) and I am on high alert during interactions, because my kids do not fit into boxes and are not even safe if out-of-the-box measures aren’t taken. Small example: Jordan had a sedated dental procedure. If he’s touched physically, he may go into panicked fight mode. If his gums are dinged up much, they may get infected, because they take a really long time to heal. If he doesn’t have somebody very close to him in the bed, he will climb and fall out of the hospital bed and fall. Just taking the IV out can cause trauma if we’re not fast, because of the intensity of his reaction to touch. It all went well, but I was exhausted by the time I got home.
Okay – I started this blog just to impress myself (myself!) with how much I’m doing this year. I haven’t looked closely at the calendar yet, but I want to see what I’m doing so that I can be gracious with myself.
I’ll just put approximate dates, since it’s weird to put more on a public platform:
Jordan sedated dental
Daniel for major orthopedic review and potential decision to start treatment
Counseling for me
Counseling for a child
Daniel cardiology to discuss echocardiogram – hopefully will get a thumbs up, but may be told scarier stuff… like needing a heart catheterization to check pulmonary hypertension.
Counseling for me
Probable counseling for child (hope the scheduling works out!)
Daniel feeding clinic…. probably going to reschedule this for 6 months out – we’re not ready.
Daniel nephrologist (including labs and urine catch… kid isn’t potty trained – hope that goes okay!)
Daniel physical therapy annual evaluation
Third post-placement report for Daniel
Anna, Maggie and me dentist
Carolyn probably needs some teeth pulled for crowding
Daniel and Carrie dental cleaning
Ooooh – our 14th wedding anniversary! definitely need to bake a cake for that!
Possible major casting and moderate foot surgery for Daniel this spring. Have to decide if we’re traveling for that or staying local. I’m nervous about it! Time to make morning phone calls and hopefully get a shower!