I can’t believe I wrote my last post on 6/19 and it is now 7/12. I need to learn how to do things more efficiently. A lot has happened. Buster had been self-harming in my last post when he was mad and that has improved as he got better from his head cold. He is still doing it like scratching his belly or legs when he is mad but this is greatly reduced when there is no pain the in the picture and that is a relief. However, Buster’s dad and I are here to catch it and put a stop to it.

I worry when he is at school that when he is mad, they don’t know how to deal with it and it will be much worse. Especially after he turned a bookshelf over a few days ago and got rugburn on his knees. Daycare filled out a report and made me sign it over what happened.

At this point, we pay for full time daycare and he only goes for 2 days per week. On the days that Buster’s dad is home, Buster stays home with him and we reduce the amount of time he is at daycare. He’s just not as safe at daycare as he should be. He does not have the needed one on one care but at this point, I still need to work.

We had a MAAS assessment with the State of Missouri. We don’t qualify for any assistance and this waiver would help by giving us Medicaid and respite care and durable medical equipment. MAAS stands for Missouri Adaptive Abilities Scale. They asked me for a notepad, pen, and quarter. Buster would not even attend to the gentlemen doing the assessment. I don’t know if he was a psychologist or a therapist but Buster can’t hold a pen without fisting it and he couldn’t make marks on the paper without me doing hand over hand. They wanted him to pick up a quarter from a flat surface but Buster would not even attend the request. I was scared he would put it in his mouth and swallow before I could get it out but he would not even try to pick it up.

It is really hard in Missouri to qualify for the Sarah Lopez Waiver and we still have not heard back but I can’t imagine him not making it. Buster required 24/7 supervision and support just to stay alive. So we are hoping for a positive result from all of this.

Buster just started hydroxyzine to help with sleep and it seems to work well. My quality of life and his have improved a lot since he started taking it. Before I was up multiple times per night and many times from 2:30AM on because Buster could not fall back asleep.

Buster’s blood test results are back and after 6 months on iron supplementation, his ferritin levels have not improved. Buster has severe PICA and gets bad side effects from the prescription ferrous sulfate but he is back on it because the carbonyl iron even at 18mg per day did not work. We need to figure out how to increase his absorption. Even with additional vitamin C and orange juice, he’s still eating everything bad. Bugs, rocks, dirt, trash…we need to get this under control.

Buster’s current safety bed is broken and he needs a new one. We are going to have to build one because we still can’t afford one after insurance because the coinsurance and deductibles are so high.

We have a lot of stuff to figure out before school starts. I need to get an SLP appointment set up for an AAC device eval. SLP at school has not issued him a device and is overall a waste of time. They do such a small fraction of therapy that he needs at school that I pray this waiver goes through so that he can get more hours of therapy.

There is just always something to be done. Written 7/12/2026 and posted 7/14/2026.