Free to Rant (No Judgement)

Ugh! My child has no concept of time. The only time that she understands is her time. Whenever she is ready.

07/17/25

Good morning,

OMG! The last few days have been very challenging and exhausting! Kayla has been in the mood where she is not going to give me any physical cues or cooperate, and she has chosen to ignore me. This is very challenging when trying to get her ready and out the door. It took nearly forty minutes to get her out of bed into her chair and dressed. Keep in mind I'm giving her cues and leaving and returning every few minutes. I look like I'm on a loop. Well, the final straw was when I was brushing her hair, asking if she would like it up in a pony or a braid and needless to say she chose not to respond so I threw the brush on the floor and said a few thigs I probably should not of and left to take a breather. After a few minutes and a few tears, I returned to try it again. She has chosen not to respond so I decided she gets the hair style I choose. We continued our morning in silence. I took her to program and cried on the way home wondering WTH! Kayla is nonverbal physically and mentally challenged so daily life can be a struggle especially when the only two words she can say is NO and the F-word. Why are the only two words she can say so negative, Ugh! Aphasia sucks.

Thanks for letting me rant.

10/03/25

Kayla and I have been so busy between PT/ OT and other appointments with her specialist. However, so happy to say that all of Kayla's test have come back negative and she has completed therapy. Yay! Now we can continue to move forward with our everyday life. She continues to have seizures but not as frequent thanks to the new medication Perpampanel and of course God.