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.

This is my first diary entry since I was 14 years old and keeping a dream journal. I was never much for writing in a journal as a kid. I had a mostly unhappy childhood and I just didn’t want to write all of those things down into memories. I would like to think I have forgotten a lot of it now that I am in my mid-40s. I don’t know if that is true or not. I am going to give this another go and see if this helps any other severe autism mom’s out there feel less alone.

I worked from home today like I do every other Friday. Buster doesn’t have daycare on Fridays and my husband is off every other Friday so we rotate on who stays with Buster.

It was a good day overall. Buster was happy I was home. He smiled at me a lot, and came over while I was working to get hugs, squeezes, and kisses throughout the day. He was able to come get my hand and lead me when he wanted something and I was able to understand what he wanted most of the time. I am learning to remember to narrate everything from his point of view as we do it. Like if he wants an apple, I say out loud, “I want an apple, apples taste good!” stuff like that. I am getting better at doing it.

Buster has started with self-injuring behaviors when he is frustrated or mad. Today wasn’t bad, just a couple of times he was mad about something and hit his block into his knee. I was able to catch him doing it immediately and stop it and tell him “no, we don’t hurt ourself when mad,” and then I redirect. I am very careful here not to give increased attention or a preferred snack or anything that can be perceived as a reward when I redirect from this behavior. That is hard because I just want him to stop doing it quickly, but I do not want to make it seem to him like I am reinforcing the behavior with increased attention and a preferred treat.

So it’s a bit rough to distract when he is mad, but I am trying to do it in a way that shows him the consequences are undesirable. His knees are a bit bruised and scratched up. He has a cold and his throat is sore. He pinched his throat last night and left red marks so I gave some Motrin and cut his nails.

The self-injury almost always improves after a dose of Motrin so I think this cold with a snotty nose and sore throat is really a catalyst for the self-injury. I am sick too and so are Buster’s middle brother and sister so we know how bad he’s feeling. I am hoping after this illness passes, the self-injury calms back down to almost nothing. I am praying about it.

Someone on Instagram said that Buster should be taken away from me and put in an institution. It really upset me even though I tried not to let it. Such is the consequences of posting publicly on social media so I have to learn to deal with it properly without being a baby.

Institutions were horrible and people often suffered, were abused, and died in them. Especially those that are non-verbal and can’t communicate what is being done to them. Buster and all individuals like him belong at home with their families. They are simply too vulnerable to be institutionalized with people that don’t love them.

Nobody can take care of Buster better than me and no one will love him as much as I do.

I worry constantly about Buster. Buster is just 4 and this is so hard. The school will not allow full days for early Childhood IEP students so I pay for full-time daycare even though he only goes 4 half-days per week. He will have 1 more year of that before he can go to school full-time.

The main issue is daycare. They call me a lot to come and get him and they don’t meet his needs very well. He is always hungry and thirsty when I pick him up so I bring a drink and snack at pickup every day. There are usually rocks or dirt in or around his mouth where they weren’t watching him properly. Often I come in and he is sitting on the floor, pulling the sticky gum off the walls (the kind that teachers use) and eating it. I have to dig it out of his mouth. I worry about it all the time.

I want to quit my job but we just cant afford it.

My husband bought a coffee trailer but after 6 months it’s still not right out of the dealer and he can’t start building that side hustle. It’s so frustrating and sometimes it feels like life is unraveling. It’s like nothing works out the way it has been planned.

Today is 6/25/2026 even though I wrote this post almost a week ago. I got pulled away from it so I am posting it now. Better late than never, I guess.