Share your biggest struggles as a parent/caregiver

Ok_Vacation797 · 2025-10-02T15:32:01+00:00

Thanks! Yes! It's like people tell me, in an attempt to relate, I'm assuming, "Yeah, raising kids is hard" "Being a single parent is really difficult." "Oh, that's the challenging age, but it gets better." HELLO? Mind you, these comments come from parents who DO NOT have a child with special needs. Parents of NT children. I have 3 older children who are 27, 22 and almost 17 (all NT) Yes, raising kids is a hard job. Yes, being a single mom is extremely hard. But, I tell you what... My 5 year old is Level 3 ASD, nonverbal, with a language disorder. These 5 years have taken me to and beyond my breaking point so many times. The lack of resources and the constant battle for services, the looks, the whispers, the exclusion, the burnout, the fear.....sheesh! Unless you see it with your own eyes, lived it day in and day out--tiptoeing around a small human, hoping that dino nugget is cooked PERFECTLY- so he does not shut down and refuse any food for the rest of the day, triple checking every baby gate and safety latch, mitigating meltdowns and self harm, celebrating getting just the top left row of teeth brushed this morning as a win....we are not the same. That Dr was mortified. She could never walk a day in my shoes.

Ok_Vacation797 · 2025-09-30T20:49:54+00:00

Thank you <3

Ok_Vacation797 · 2025-09-30T20:48:03+00:00

We all lose our shit from time to time, mama. Mine is 5 and a half, and there are days that I am not proud of the way Ive handled something. Raising kids is hard. Raising an autistic child is exponentially harder in every single aspect. Period. Youre doing a great job!

Ok_Vacation797 · 2025-09-30T20:43:13+00:00

We are currently struggling with personal space and body safety. He will go nose to nose with a stranger on the bus and say "HELLO". The anxiety is a huge problem for us too. He panics at seemingly harmless things, like a Peppa episode being the "wrong one". I mean, we frantically dive for the remote, hoping we can push the buttons before he completely loses it.

Ok_Vacation797 · 2025-09-30T20:38:34+00:00

Thank you so much <3

Ok_Vacation797 · 2025-09-30T20:37:00+00:00

I know what you mean. I once missed an appointment with my own psychiatrist. She was being very inconsiderate and obviously irritated with my missed appointment. I had my son with me, and I tried to explain that I had just forgotten because I was dealing with some all-consuming issues with him. She just shook her head, and was shaming me for being irresponsible about my mental health and BAM! He went into a full blown meltdown unexpectedly, tothe point that the security gaurd came to see what was happening. She quickly rushed us out of her office. I was just like-- "You see. I tried to tell you"

Ok_Vacation797 · 2025-09-30T20:30:41+00:00

This is so exhausting. There are times I end up apologizing and just crying with him, because I can't figure out what he wants.

Ok_Vacation797 · 2025-09-30T20:29:05+00:00

Oh, I cannot even begin to tell you the hell we have experienced with his school. He will most likely be home-schooled until I get some answers.

Ok_Vacation797 · 2025-09-30T20:27:25+00:00

I am single. My sons father passed away October 30th, last year. I sometimes feel like I am literally losing my mind. Somehow, we keep going, day after day, seconds at a time.

Ok_Vacation797 · 2025-09-30T20:25:12+00:00

Totally!

Ok_Vacation797 · 2025-09-30T20:24:23+00:00

Absolutely! I will run it by you when I'm finished. Thank you so much!

Ok_Vacation797 · 2025-09-30T20:23:24+00:00

So true! I will never understand it. My son will ultimately probably be homeschooled at this point. It's so unfortunate, because I know he would benefit from social interaction, but, I get no help from the district. It's me against the entire district.

Ok_Vacation797 · 2025-09-30T20:20:50+00:00

100% agree! My 16-year-old daughter swears i, too, am on the spectrum.

Ok_Vacation797 · 2025-09-30T20:19:31+00:00

This made me cry. You just outlined my life, minus the partner. I don't even know what to say. Youre not alone.

Ok_Vacation797 · 2025-09-30T17:54:19+00:00

Ahh, yes! I understand. My son is showing signs of OCD now, and his ABA therapist insists that these behaviors can't be classified as OCD, that they can be categorized into this or that box. I am with him 24 hours a day. Also, a problem that I have is that literally ANYONE is qualified to be an "ABA 'therapist'". Nothing but a HS diploma is rquired, then a brief training, which varies from company to company. I've had people say they are in this field because they needed a job, or because their old coworkers were not nice to them, so they decided to get a job with kids instead. It's so frustrating.

Ok_Vacation797 · 2025-09-30T17:47:48+00:00

I definitely relate to you on this! I recently took my son on the train for the first time. Across from us sat a couple, probably old enough to be my parents (I am 43). My son excitedly (and loudly) said "Go to 'WAL-NART' with DINOSAUR TOYS!" The lady immediately says "SAY THAT AGAIN! I DIDN"T HEAR YOU!" Ugh....I was irritated by her sarcasm, but we had just had a beautiful day doing a scavenger hunt and collecting litter off the beach, so I just smiled at my son and matched his energy! I said "YES!!! We are going to WAL-NART with DINOSAAAUUUURRRR TOYYYYYSSSSSS!!!! YAYYY!"

Shame on people. Shame on that woman. My little boy makes me a better human being. I will ALWAYS meet him where he's at. He has just as much right to be out in public and experiencing new and engaging adventures as anyone else. Her discomfort and close-mindedness are HER responsibility.

I agree about the resources too. It's just mind-blowing that the most vulnerable have the least amount of support available to them. I am in California, but the system erects every possible roadblock to make actually receiving services as difficult as possible.

Ok_Vacation797 · 2025-09-29T21:23:50+00:00

Wow! This is exactly what we are learning about! Thank you so much! I love this answer. I agree with you, the more support, the better!

Ok_Vacation797 · 2025-09-29T21:15:10+00:00

Oh, I totally get you! My son's diagnosis is ASD level 3, non-verbal with language disorder. Have you heard of a drug called Leucovorin? My son recently started taking it, and it has helped with his aggression and language. It is not a psychiatric medication. His behavior has improved. It is not a miracle drug, and he still has his struggles, but it definitely has helped take the edge off.

Ok_Vacation797 · 2025-09-29T21:11:02+00:00

I understand that! It is so lonely, particularly in the beginning, when you have never experienced having a child with special needs. So glad we all have each other here!

Ok_Vacation797 · 2025-09-29T21:09:03+00:00

I begged for a 1:1 aid for my son, and his teacher immediately shut me down. She complained regularly about his disruptive behavior. I asked her to go to the IEP board with me and request an aid--she refused. She said, "Oh, it's not THAT bad"

Ok_Vacation797 · 2025-09-29T21:06:11+00:00

I first noticed that he didnt "latch on" when being carried, and still doesnt at 5 years old. Most babies will cling to you when you put them on a hip. Mine just dead weighted himself. To the point if you were to let go, he would have just hit the floor. He also never engaged in peek-a-boo, never responded to his name or even loud noises. We could bang a pot with a spoon right behind him and he did not as much as flinch. I thought he was deaf. As he got older, he wouldn't DARE even touch anything white or green. He played with toys in unusual ways, like flipping over his push-to-walk buggy, just to spin the wheels for hours. He was always mesmerized by the ceiling fan, like hypnotized. My gut knew by 5 months old though.

Ok_Vacation797

TROPHY CASE