u/ProfessionalSteak69

This may be a long post but I’ll try to keep it short. I’m just overwhelmed by life and the medical system with my son.

To start he was 5 weeks premature, spent some time in the NICU, and upon discharge we got the whole higher risk for any number of developmental diagnosis but we were just excited to have our first child together so we were SURE he’d be “normal”. Then delays started happening immediately, then medical issues. Now it’s been 4 years of specialists all over the state and “idk” and “get a better support system” from doctors EVERYWHERE.

My son didn’t talk until 3, not even mama or dada, mumbles and flapping his hands if he wanted or needed something. Well he’s been on a wait list since 2 for this. He’s almost 5 and we’re beginning speech NEXT WEEK. Now that he can talk in his own way, years of no support. Looking up tips and medical documents to try to help our child ourselves because nobody else did.

He has extreme sensory issues that completely dictate our life, his play therapist strongly feels he’s ASD level 2 and urges us to keep trying to seek a diagnosis (we travel 3.5 hours to a larger hospital to see a geneticist, a neurologist, a urologist, and feeding therapy all of whom want us to see a diagnostic specialist that has another 2 years on a wait list for us that he’s been on since age 2)

He’s so quick to frustration and anger and he will pull his hair (which we shave because he hates it touching his ears, he hates the water touching his head in the bath, hates brushing it), his siblings, mine. He’s always kicking and screaming at the slightest inconvenience. He’s broke 4 TVs throwing random items when upset. He hates loud noises but shouts for hours on end because he likes the sound.

He has ARFID and we’re trying feeding therapy because this kid lives off of quesadillas and juice, very specific oat bars, and cheese puffs. He relies on meal replacement supplements and a vitamin routine to stay healthy. And any water? You’re not touching him with it, he gets a sip of water from a fresh water bottle then it’s ‘no good’ and he can’t touch it again. We’ve had to get IV fluids for him at times as he’ll dehydrate himself without the acceptable juice in a cup.

I feel so bad because I feel like every sign is there to diagnose but the psychologist at the feeding clinic wouldn’t diagnose because he made EYE CONTACT. Eye contact. I understand that’s a big thing but it was ten seconds total of the entire hour long meeting where my son was in a corner growling and lining up small objects to the largest size and only talking about robots when he did speak.

He saw the neurologist for facial and vocal tics and extreme stereotypy behaviors. (Who supposedly could’ve diagnosed as well according to play therapy?) he RAN AWAY and I had to get my husband to come up to help with my 1 yo daughter in tow. Nurses, doctors, staff and mom and dad chased him down the hall until we could finish the appointment. To which they sent us to genetics because they want to check for genetic disorders.

He doesn’t play with toys, he’s obsessed with sensory play (which we engage with heavily in the home), we struggle to take him anywhere. Like yesterday at the grocery store when he was screaming he wanted to sit in the car (it 85° out) or sit at home because he “just is a home kid” we carry him everywhere, and he’s 4’ tall already because he hates walking and will start throwing himself into a wall. He doesn’t SLEEP. He’s a sleepwalker who just has days he’ll go and go and go. Im lucky enough to stay home with our kids, but I end up so physically exhausted I feel like I can’t keep up with my house, I can’t give all of our kids a good life and I end up so sick I can barely get out of bed. My husbands on his last leg at work because he has to constantly call out for appointments, or for me because I can’t get out of bed. We don’t have anyone to help with our son. Our girls get days with nana during appointments but I understand why my family and my husband’s really struggles with my son.

My family tells me constantly ‘he’ll grow out of it’, and “it’s how we parent him that the issue lies in”. My husband’s family is genuinely concerned as we are because they see how much he struggles with the mundane despite our best efforts.

He’s supposed to begin school in the fall, at a specialty school for children like him just sort of in between any diagnosis but unable to get the support needed in a standard classroom (and we’ve had an awful time getting him to even begin any therapies because the school just doesn’t know what to do! They have been awful and I’ve had to literally jump through hoops with the pediatricians office to try to get them to fulfill their end of helping him get care).

I feel a sense of relief almost that he’ll be somewhere others can watch him and catch these behaviors and maybe try to help. But it’s 40 minutes from me and we get no transportation assistance from the school. And it’s a full 8 hour day for him, and they don’t do naps. They don’t do special diets so we’ll supply all his food. And my biggest fear is this will do the opposite of help. My husband and I have been talking a lot about both going part time and just accepting having a smaller income because our life is becoming unsustainable in this way. And with no answers or diagnosis, we get no assistance in any serious capacity for long term help. Or even short term. I feel like I’ve lost a battle I can’t stop fighting.

I started seeing a therapist a few months ago and it’s been an awful experience,

She’s late, constantly rescheduling, in 3 months I’ve had 3 “weekly” visits. Today during my son’s feeding therapy, she wanted to schedule last minute today immediately after, well she’s 30 minutes late to the appointment. Extremely unprofessional and I did report her later because of what transpired.

A few weeks ago. My son was hurt by his dad, it was an accident. He was lazy and didn’t get up instead lifting him over the couch and he cut his face on the Velcro attaching the cushions. Well I reacted poorly and we got into a fight and instead of giving me our son, he held onto him tighter and I took the girls outside before coming back in to help him. Mind you my husband feels AWFUL about this still so this is going to be horrible to explain once he’s home as well.

***edited for more detail. I had saw my son’s face before dad, yelled at my husband, who then told me I was too dramatic, then HE saw and felt awful. I was upset. I went outside to the swingset and let the girls play before I came back in a bit more collected in my thoughts solely so I didn’t throw the entire cuss collection I have stored in my head at my husband for my kids to hear

Today, i had discussed with my therapist the idea of my husband and I sort of switching rolls and him staying home more and me going back to work (I’m a SAHM currently and he has the opportunity to cut hours majorly) my therapist goes on to tell me it seemed like emotional manipulation and that I’m in a DV relationship because I LOVE being a SAHM (I do, but like, I wouldn’t mind working???) she was very rushed and telling me for the kids safety she’s calling CPS, and the DV hotline and a welfare check. Hours pass, still nobody shows up and I hear nothing else so I call her and ask like WHAT is going on.

She just called CPS. I need to leave my house and stay with my mother. Great! But I live an hour away from her. My mom’s confused, I’m confused. My husbands at work so he doesn’t even know what’s going on.

I’m terrified now because how will this work, will CPS show up to my moms or to my home? Am I allowed to have my kids see their father? Like I’m so confused and scared. And even more so because we just purchased our home and it’s under MAJOR construction. It’s safe, it’s ugly though; all tools put up but plastic covered insulation in the walls we’re drywalling, the living and the kids room are the only put together spaces right now. But our bathroom is a hot mess and we have ‘no kitchen’ because we’re waiting for the cabinets to be delivered. So if they do show up will we get into trouble? This is terrifying and I’m so angry at the therapist that NOW is the time she calls if she feels it’s necessary?

So to begin, virtual therapy is fairly new to me, I’ve been in therapy for YEARS and loved it; but life got in the way. (as it tends to do sometimes)

I finally was feeling the stress enough that I called and reached out to a virtual office, got an appointment within the week and it was… different but okay. The therapist was late, a little unprofessional and sort of just kept telling me how I feel rather than allowing me to explain? And fast forward almost 2 months of weekly visits, I’ve seen her 3 times, once via video chat, the other two phone calls, and she’s rescheduled the other 5 times or not shown up.

Today though? I’m so upset and frustrated and just at a loss.

She called me during my sons feeding therapy, then began frantically texting me asking if I could reschedule for today instead of our ‘typical’ Friday (which she had rescheduled already from 7:30 to 11a 🙄)
I told her no big deal I’d be available just maybe a few minutes late because of the feeding therapy; well I tell her I’m ready at 2:02pm. She tells me to “give her a few”- then calls at 2:35pm (our session is over halfway over now) and she’s talking to the kids in the background and not really paying much attention to me. (Totally whatever, if your kids need help I absolutely understand, but why re-schedule me at an inconvenient time?)

And immediately as I’m talking trying to explain my life and the plan my husband and I have and everything going on to “switch“ roles for a while to try and relieve stress (I’m a SAHM, he works 65 hours a week and wants to spend more time with the kids) that I’m in a DV relationship and she’s going to call CPS to report my sons injury, and the DV situation. And that I’m not alone. While I’m upset and crying and she hangs up.

Her reasoning behind the DV title? My husband is having some mental health troubles which I’ve voiced concern over but he’s waiting for therapy now and going to his GP appointment on Friday to discuss medication. He has severe ADHD and with that will come mania, and lows etc, something we manage fairly well but not perfect obviously. Her other reasoning is I LOVE being a SAHM and I’m being coerced into working and leaving the relationship dynamic (I’m okay with it?); and the accident involving my son!

Now I will explain it almost exactly as I’d explained it to her. (Not verbatim because mind you this happened weeks ago but today she decided it was worth calling to report?) My husband was mad the kids were playing in the kitchen while I cleaned up, and our couch is the divider from the dining table(/kitchen space) to the living room, so my husband reached over his head instead of getting up from the couch and grabbed my son, our couch cushions are held in place with Velcro and his face had scraped against it so he was cut. I was furious, I yelled, I shouldn’t have. My husband had a poor response and held my son away from me while I took our daughters outside. My husband shut down for the day out of guilt because he truly didn’t mean for him to be harmed. Does that make it okay? No. Should he have gotten off his butt and helped in a more proactive manner? Absolutely. BUT that doesn’t make one BADDD moment a DV situation???

Maybe I’m wrong but in no way do I think my kids would be/could be abused by this man in a manner more than he doesn’t feel like moving? I’m hurt. I’m confused. I’m scared. She later calls and started telling me I needed a safety plan and to go somewhere else, and she needed to call the police for a welfare check and she would check with her supervisor about what to do. So I ask for her supervisor’s number and balling my eyes out and she hangs up.

Then she’s messaging me about personal information, I again ask for the supervisor’s name via text and she doesn’t answer. Then I call my mother hysterical saying like “hey I need help I was told I have to leave the home and I’m being abused as are the kids” and even she’s like “um? Weird okay you can come here”

After I calm down a bit I contact the office again and report the incident and tried to get more information because no police are here, I’m not getting through to my therapist. And it just feels weird? They immediately continue apologizing, I was never supposed to be called via phone only via Telehealth, it’s a HIPPA violation for the children to be there as well on her end, telling me every therapist is entitled to make a mandated report and it’s at their discretion. Then they tell me no police were contacted. There was no welfare call made to their knowledge and her lack of professionalism was upsetting to the company.

Later my therapist calls me AGAIN and explains that as long as I’m at my mothers it’s fine and CPS will contact me, but like, how long do I stay outside of the home? What do I do? How do I talk to CPS, do I have them come to my moms or come to MY home, it’s about an hour apart and two separate counties so like what do I do? Are my kids allowed around my husband? No questions were answered just the vague, crappy “you’re not alone!” Blanket statement to everything I’d asked before I finally hung up and blocked her.

Update for the following day !*****

The supervisor called, and had told me CPS was called for emotional abuse concerns towards myself, and the children via my husband; still no call from CPS but they have 48 hours to respond so we’ll see 😬

To cut a very long story short, my husband and I got the amazing opportunity to purchase a decent sized property surrounded by 1100 acres of state forest! The down side was it sat vacant for 5 years prior and the home was falling apart. So very little questions asked we signed the deal, and prepared to live life the way we’d wanted and envisioned for years!

My family had hired another family member who is a very well known contractor in the area to help with some repairs and to do the initial inspection. And stupidly so, he had convinced us to keep the home that sits on the property (we wanted to move a park model RV onto the property and build later)
and he had signed off on the condition of the well and septic. He began repairs, and never showed up to finish. Anything.

We are currently living with no running water, no bathroom floor, no kitchen cabinets or real kitchen, no shingles on the roof, unknown septic; the well-house plumbing was detached and separated. We called another plumbing company out and they couldn’t make heads or tails of it, the system is a mess of garden hose, tape and old waterlines. The quote for repairs is out of budget right now because they want to gut it and start fresh, and given we had paid a small fortune for it to be repaired and inspected by someone we trusted. That’s not an option right now.

We’re taking on smaller repairs in the house as far as flooring, etc but we are in over our heads for plumbing. Right now we’re living life out of 5 gallon jugs, and the toilet to our much smaller project RV. We turn the switch on for the well pump and go to the water line that’s just dangling out of the well house to fill 35 gallons every 2 days. But lugging them everywhere is a lot given having three young children and a plethora of repairs so I’m just curious to see if anyone else has any better solutions!

I wouldn’t mind a water storage set up, but does anyone have any advice to get a hot shower again? Literally any and all advice is welcome!

If you had to completely gut and renovate an older mobile home or just buy something new which would you choose? Really just trying to make heads of this because this is our forever home and with the kids this hasn’t been easy!!!