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this post was submitted on 10 Aug 2026
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My kid is Non-verbal autistic with epilepsy. One day he had an appointment with his neurologist. We are walking down the apartment stairs, mother in front I'm behind. He goes into a seizure. I catch him and hold his head between my legs so he doesn't hit his head on the cement steps.
Suddenly my phone rings, it's my sister. We are not no-contact but rarely talk so it must be important so I answer. Her first words as I'm holding a child actively seizing between my legs were "hey, so mom broke her neck"...
One of the ones that stand out to me was floating security in a music venue I spotted a patron alone about to have a seizure and was able to intervene before they fell over and got injured.
He has bad epilepsy so seizures are kinda a normal occurrence. He takes 4 medicines in morning, 1 mid day, 5 in the evening and 1 before bed but most days it's about 25% chance of if hell have a seizure. Really only get concerned if it's over 5 in a day....
I worked in a group home for several years. Those seizures are no joke. I'm so sorry you're dealing with that. I had a girl with drop seizures. I got really good at reading when she was about to seize. Several times I saw it across the room and darted catching her before she did any damage. My coworkers were always shocked.
I remember one time when she came to she was signing to me (she was deaf) any my clothes were different. We had matching shirts that day and she LOVED it. I didn't have the heart to tell her it's because she peed on me as I saved her from taking a face plant into the edge of the counter. I still miss her. She was awesome.
Yeah I don't know exactly why but seizures often result in uncontrollable pee.
He was so much better a few years ago. He was on only 2 medications twice a day. The pharmacy was out of one of his medicine and we ran out. I gave him his other hoping it was enough. He got to school but didn't even get into the classroom before seizing. The school called 911 and he was taken to hospital (yes school was aware of his conditions). Since then we have been fighting to get back to that state but his muscle control is decreasing and his seizures are more common. Not looking for medical advice, as I said he has like 7 doctors and gets good medical care. I'm just venting.
I can't say I fully understand but, I have a glimpse of understanding. I'm so sorry man that sucks so hard. All you want is to see him happy and healthy. I'm hoping the best for you and him. You guys deserve some good things.
I'm sorry, I shouldn't be putting this negativity on you. We'll figure out a life. Go live yours.
Man, if you don't open up and talk about this shit, it will consume you. At 22 I had to put my mother in a nursing home due to severe brain damage. That shit almost ate me alive. I could talk about the day to day but, I couldn't talk about my feelings.
That shit made life dark. If you don't have a support network, find some online groups. It's hard to do what you're doing. It's hard to get up every day knowing what the day is going to bring and worrying if it's going to get worse. Holding it all in makes it harder!
Now, I'm not saying go out and trauma dump on every employee at your local grocery store lol. Consent is key. Friends, family, a support group, a therapist, find someone to talk to. You shouldn't and you really can't do it alone. Not in a healthy way anyways.
For the record, I'm consenting to this conversation and you're not bothering me. I can put my phone down at any point. If no one has told you lately, you're a great parent and I'm proud of you. Please, take care of yourself too.
I understand, my own father died when I was 13. It almost ate me too.
I'm not a great parent, I do care for him and I make sure he has food, medicine, milk(he loves milk but omg is lactose free milk expensive). I drink too much, smoke too much, generally a waste of person. He has a roof, his own bedroom and his own TV for entertainment.
Honestly, you sound overwhelmed and depressed. And who wouldn't be in your situation. All the more reason to find support. You may not think it but, you deserve it.
I've been going through severe depression for a while now. I recognize it but cant get out.
It's hard man. I've been there several times. It's hard to want to get out too. If you have the ability, please reach out to someone. Getting on some meds and seeing a therapist can be really beneficial. I know all your energy goes to caring for your son so I know that feels impossible. But you deserve care and support too. Even if you don't feel like you deserve it right now.
Your feelings are valid no matter what they may be. But those feelings might not be telling you an accurate story. Being overwhelmed, burnt out, angry, depressed etc are all valid to your situation. But feeling worthless and not worth improving are not an accurate story.
I've tried therapy twice. Once when I was 13/14 and the school made me. They gave everyone a "stress test" which was basically a list of life events given points and you go through and add up how many points you experienced in past 12 months. It was like <20 carefree life 20-40 mild stress 40-60 high stress, look into methods to handle stress 60+ extreme stress seek medical help. I got over 300 😢 (my father died was like 80, my dog died on day of my father's funeral was like 60, failed a class was another 60, my father was sick before dying another 60, plus some random smaller ones). Anyways I went to therapy for about 6 months, it was mostly useless. The reasons I was there were out of my control. It wasn't like I was acting out or self harm or anything for me to change, just had a series of bad events and freaked out the school.
Early twenties long story short I took 100 sleeping pills trying to kill myself and ended up in hospital psych ward. Was diagnosed as bipolar with rushed thoughts. Was prescribed Lexapro for depression and depekot for rushed thoughts. I never felt anything from the Lexapro. I told the therapist the depekot felt good but didn't feel like enough. She had my blood tested and said I was right it wasn't enough and increased me from 5mg to 10mg. It felt great, I told the therapist it was perfect but she wanted blood work. She says I was still low and increased it to 20mg. I was sick as hell. Like in hospital but nurses come to either check on me or tell me to go to something but I can't leave the bathroom as I have stuff coming out either the top or bottom exit of my digestive system. The nurses even told the therapist this, she wanted blood work. My levels now matched what she wanted and discharged me.
Yeah... Not a good history with therapy.
I understand your hesitation and that sounds awful. Therapy as a whole has changed a lot especially in the last 10 years. That being said, some therapists still suck and shouldn't be therapists.
Jeez that's a rough day, hopefully both are doing better.
My mother is mostly recovered, she says it's still stiff sometimes but that's it.
Still working on the kid, he has like 7 doctors and takes a pharmacy of drugs per day but it's only partially effective.
Glad to hear about your mom. Stay strong with the kid stuff, thats a heavy cross to bear.
Should also say my mother didn't technically "break her neck". Supposedly there are small spikes on your spine at the very top where it meets your skull to hold your skull in place. She broke one of those spikes.
He has a bunch of issues, liver issues, lactose intolerant, mostly deaf, little motor control etc. For example he's about to turn 13 but can't use bathroom alone and still watches shows like team umizoomie and blues clues.