ABOUT ANNA

Anna is complex in many ways. She is basically non-verbal, her “language” is a mix of using PECS, a few simple words, an iPad App (Go Talk Now), and hand gestures. She does speak a few simple words, all single words and never a phrase. For a reason we can’t understand, at the moment we are seeing more and more moments where she is trying to communicate to us about her wants and needs, we are trying to understand what she is saying, and all we are doing is getting frustrated with each other because no one “get’s it”. 

This has resulted in more self injury behaviors in Anna, which is how she typically shows her frustration. Anna will hit herself, sit down and bang her head of the floor, bang her iPad against her head, bite herself or us, pull hair, push furniture over, pull pictures off the wall, ect…

We don’t have a solution to this other than to try and redirect her and prevent her from hurting herself more and working to “Anna proof” our home. For the last month or so she has had almost continuous and noticeable bruising somewhere on her body. As a paid caregiver I am required to document each episode, along with everything else that we do for her. Depending on the severity of the episode I am also required to report these episodes to the state, which is intimidating as you can imagine. I do my “charting” daily and pretty much have a system now where it takes me about 15 minutes to complete.

I know Anna understands us better than we do her.  Both Denise and I can tell her to do a simple task; if we tell her “Let’s get up and go use the rest room”, 9 times out of 10 she will do that.  If she is frustrated with something we can say “Show us what you want” and 8 times out of 10 she will lead us to whatever she wants or needs.  So there is something there, Anna understands and sees more than we realize, everyone that works with her has seen and told us this. We believe a huge part of her frustration comes from either she is not feeling well and/or she is frustrated with us because we do not understand what she is saying or needs at that moment.

Going along with this are some medical issues she has. For the last few years Anna has been dealing with a Thyroid issue. In March of 2023 she had her Thyroid removed which necessitated the start of hormone replacement treatments. Without going into all that goes with this, we finally have Anna on a correct dose of replacement hormone that has resulted in normal TSH levels, we think we have her correct dosage found.

In addition to this and at the same time she developed Celiac Disease, which we are still trying to resolve. Finally, 6 weeks ago in a moment of frustration she stuck her hand between the wheel and frame of her adult stroller and broke 2 bones in her hand. So for Anna, she has dealt with a series of health issues for some time.

The last thing I think I should mention about Anna is her sleep habits; Anna will not relax and calm herself down at night unless both Denise and I are home. She will pace around the house in spite of being given a sedative beforehand.

Oh, on that; Anna does take Trazadone and Xanax to help with the nighttime transition, the medication given depending on how the evening is going.  We generally give her 2 mg Xanax about 2 hours before bed and then at bed 50 mg of Trazadone right at bedtime. She generally likes to fall asleep on the couch and then when it comes time for actual sleep we will put her in her bed and if needed give her an additional 50 mg Trazadone.  She generally sleeps an average of 8 hours a night but will regularly get up/scream out in the middle of the night.  In a sense the night time routine for our house is like that of new parent’s, more often than not we are up at least once in the middle of the night and we are sleep deprived.  This is much harder on Denise than it is for me, but it is wearing….

My biggest concern for Anna’s care during my recovery is how Denise will manage the nighttime.

So lesson’s to possible make a note on for this chapter of our story;

- MAKE SURE ALL CAREGIVER’S UNDERSTAND/INTERPRET YOUR CHILD’S LANGUAGE THE SAME WAY

- MAKE SURE ALL CAREGIVER’S ARE SEEN AS AN EQUAL AUTHORITY FIGURE