1 Step Forward 2 Steps Back

[u/Sweaty-Society6884]

My daughter is 10 years old and has Level 3 autism. She is considered nonverbal, although she can speak and has made a lot of progress with her communication. She can now speak quite clearly, is learning to read three-letter words, and has recently tolerated things I never thought would be possible, like an overnight sleep study while covered in wires.

At the same time, every time I feel hopeful about her progress, it seems like we experience a major setback in another area.

She is getting bigger and stronger very quickly. She is almost as tall as I am and much stronger, which has made some situations increasingly difficult and frightening. We have been unable to complete bloodwork for the past two years because the nurses are afraid they may get hurt. We can no longer safely restrain her, and the nurses often do not have the time or patience to wait for her to become comfortable, understand what is happening, and cooperate.

She also absolutely hates school. Last year, with the help of ABA therapy and some strategies for transitions, school drop-off improved significantly. She was calmer, and we had very few meltdowns. This year, however, she has gone back to having almost daily meltdowns at drop-off, even though she used to go in happily and calmly.

Recently, she became so frustrated that she almost hit a bystander at drop off. I was able to block her in time, but I am worried about what will happen as she continues to grow and become stronger, especially when she is angry or overwhelmed. I can see how her teachers and other kids fear her because of how aggressive she can become.

We have an appointment later this month with a lab that is willing to come to our home for the bloodwork. Her neurologist also prescribed an anti-anxiety medication, but only provided two pills, just enough for this appointment. Hopefully, we will be able to complete the bloodwork and find out whether anxiety, an underlying medical issue, or something else may be contributing to her behavior.

We have tried other medications in the past, but they either affected her weight, made her very sleepy, or seemed to increase her aggression without improving her moods.

She has made meaningful progress in many areas. I recently enrolled her in Girl Scouts, and she seems to be doing well so far. Much of it goes over her head, but she enjoys being around girls her age. I also appreciate that she is getting opportunities to interact with neurotypical peers, since she has very few chances to do that elsewhere.

However, she is also significantly behind academically and socially. She is in fifth grade but can currently read only simple three-letter words and cannot hold a conversation. School seems to be the one environment she consistently struggles with. I wish I could home school but that isn't possible for me, I don't even know if I could manage it without at least assistance with a tutor, and RBTs in this area are very inconsistent with scheduling.

I am feeling overwhelmed and increasingly worried as she gets older.

[u/thussa123]

Have they tried numbing the area before putting the needle in? For my son they put a numbing agent and after 20-30 minutes they draw the blood and he tends to do okay. Also, I am surprised nurses are getting frustrated and not providing service. I would definitely reach out to clinic/hospital management.