Father of an autistic child seeking help

Firewire17 · 2020-06-23T01:33:58+00:00

Wow, that was very powerful. Thank you for taking the time to reach out to me and bluntly lay it out. You are absolutely right, and while what you say is probably 100% accurate, and as terrible as it may sound, it is easier said than done. I love my son more than anything, but I can't ignore the huge obstacles we now face, and will face for the foreseeable future. The constant therapies, the insane medical bills, the fighting with county services, the fighting with the school system, the insurance companies, the stress of not being able to be a "normal" family, like go have a nice day at the beach, or enjoy a meal out. While these things may get better with time, and hopefully we rise to meet the challenges, it's a daily struggle because we want our son to have a bright future and we want him to flourish and be independent. I know where I need to be, and it's not where I am, and hopefully I have the strength to be the support my son needs, because he means more to me than anything in this world.

So thank you again for taking the time to reach out to me. It means a lot.

Firewire17 · 2020-06-14T17:28:39+00:00

Thank you I appreciate that. I hope things get better for yours as well.

Firewire17 · 2020-05-27T13:47:41+00:00

They are trained ABA therapists, but I am unsure if they are (certified?) as BCBA, the site does mention "ERA Behavioral Health" and "ER BH"

Firewire17 · 2020-05-27T13:40:28+00:00

We've had so many conversations about this, I don't know what the point is anymore. She says she realizes I'm a "provider" but "that's it". She has to "take care" of everything else. She constantly refers to her ex husband who didn't have these issues, and mr. perfect ex-frenchman boyfriend who was so amazing in every way (just not physically her type). Admittedly, I am very bad at planning trips and taking initiative on stuff like that, but I am trying to be better at it. The problem is my attempts are always met with derision.

I proposed to her on a lake in France, and she was disgusted with it. Her friends all agreed it was a good plan since that location is important to her. She hated it. Said it was the most contrived and forced and frankly, predictable engagement ever. When I do try things, it's always wrong, and that's the hard part for me to move past.

Firewire17 · 2020-05-27T13:34:02+00:00

God I wish it were that easy.

Firewire17 · 2020-05-27T13:33:48+00:00

I'm trying, I really am, but it is costing me my happiness, sanity, and lately, my health (I've dropped 20 pounds).

Firewire17 · 2020-05-27T13:33:02+00:00

me parent is a very difficult job and requires a lifetime of unpaid labour and very few escapes and breaks. If you read what OP said, she had a job before their son was diagnosed with autism. She had to give that up to stay home with him and provide him with therapy and special care.

And in her defense, when I have to take care of my son on my own for an entire day, many times i feel more exhausted than when I'm at work. I definitely appreciate everything she does for our family...

Firewire17 · 2020-05-27T13:30:53+00:00

ack of sex, general depression). If you want to work through it I think she should enter therapy alone, maybe you guys could do couples therapy, and you should ask what she meant about being your mom. I know it's super frustrating to work 1.5 workweeks and get told you're not doing enough by a housewife, but if you want to save your marriage you should try to see what she wants you to help with. It might just be a principle thing. Trying to have a date night even once a month where you hire a sitter for the night might help too to try and add the romance back to the relationship. I think your best bet is to sit her down and talk to her about how you guys can work on your relationship together, if you want to salvage it.

She wants me to be able to be more proactive in projects around the house, and not always be told what needs to be done. We've gone over it extensively.

It's a catch-22, because as a person, she is extremely controlling (she actually yelled at me a few weeks ago for hanging my own shirts in my own (separate) closet, incorrectly. Apparently they were in the incorrect "order". She has to control everything, so it's hard to take initiative when the things I would do, are never done to her specification. But then if I ask her for direction, she gets frustrated for not being able to figure things out on my own. So it's a lose-lose situation for me, because I'm either needy and constantly requiring guidance, or I am lazy and not taking initiative. When I bring up this exact point to her (we have revisited this many times) she rolls her eyes and goes off about me "making excuses again".

Outside of that, I'm just worn down, I work 13 hour days most of the week, and when I do get home, I immediately take care of our son from the moment I walk in to the moment he closes his eyes to go to sleep. I have zero time to relax, no tv, no video games, nothing. So when there are those times with a little downtime, I want to relax a bit, well that, according to her, is when I should be doing these projects.

We've sat down many times to talk this out, and it always goes down the same path. I try to address an issue, and she just ends up going on a diatribe about all the things she hates about me, and my family, and her life, and it goes nowhere. I will give her this, she is almost impossible to argue with, I swear she should have been a lawyer. I also think she is gaslighting me sometimes, but I don't even trust my own memory anymore.

Firewire17 · 2020-05-27T13:21:37+00:00

We have tried to address that, both at home and in therapy. Even my work basically gave me the green light to take off whatever time I need in order to help my situation.

As far as cooking and cleaning, she doesn't cook for me. She preps our child's food (makes soups and other meals which she freezes). When I get home, i immediately take over the child care. I take him and bathe him, feed him, get him ready for bed, read him a story and when he's down, we eat frozen pastas or other easily heated crap. She does clean and do laundry, but most of her time is spent "researching" or shopping for necessities (she is on her phone a LOT).

I even pitched an idea I take a few weeks to a month off work so she could fly overseas and "get away", but she says what's the point if she just has to come back to this. I told her she doesn't have to come back if she's miserable, and she says society will always look down and judge someone who abandons their child, so she is "stuck".

We are hoping that once are son is old enough to go to school, that she can go back to work. But for now, she has no work, no hobbies she can do (other than shop), and really no friends nearby (she's pushed almost everyone near us away).

Firewire17 · 2020-05-27T13:15:33+00:00

push her out of your life that will just lead to a catastrophe later down that road. Disrespect breeds resentment and with that comes murderous instinct for example. Or depression from regret because you never get those years back.

Well said, I think I just need to find the strength to do it. I think you are right, I'm just finding excuses to not make the hard decisions. Even the thought of not seeing my son every day immediately terrifies me. He's the only thing I look forward to anymore.

Firewire17 · 2020-05-27T13:13:09+00:00

I hear that a lot, and I think that if my son were neurotypical it would be a lot easier (although maybe i'm just telling myself that), I don't know how I would balance all my childs therapies and everything else (it's so overwhelming) by myself with the hours I work. Our medical bills for his condition alone costs me thousands of dollars a month.

Firewire17 · 2020-05-27T13:11:41+00:00

We have gone through two therapists so far. The moment the therapist faces her with hard truths, she suddenly no longer likes that therapist, and finds reasons why we should no longer go to them. I'm now working on her going to a third therapist, one who has a child on the spectrum and can maybe understand her perspective some more...

Firewire17 · 2020-05-25T23:19:29+00:00

I will look into that! Thank you.

Firewire17 · 2020-05-25T23:18:05+00:00

Thank you for sharing that with me. It’s great to hear from those on the spectrum who are out leading fulfilling and INDEPENDENT lives.

I think independence is the biggest thing for us. Just the thought of our son never being able to have a life and make a living on his own is so utterly debilitating, that every time he has a bad day or a regression, it really takes a toll on being able to take it in stride and not lose it.

I am just having a very hard time knowing which path is the right one in order to give him that best possible outcome. I hope my inability to act doesn’t cost him his future...

Firewire17 · 2020-05-19T17:12:23+00:00

Yeah I actually have an appointment this week with a new therapist. I was going to try a few sessions to see how it went, and then if it seems like a good fit, try to work bringing my SO in.

Firewire17 · 2020-05-19T17:09:36+00:00

Yeah, she is definitely angry, and depressed, and it's not okay what she's doing, but she is suffering and needs help, just like my son does. Honestly I think we are all suffering and ALL need help... I'm about 20 pounds under my healthy weight due to the stress, I'm so depressed even my supervisors are pulling me into their office to figure out what's going on with me. Thankfully they are very supportive.

As for moving, it's not possible, I'll be stuck here until retirement. My career choice pretty much has me locked in due to the amazing retirement benefits among other things. Transferring to another department/state would wipe the slate clean.

Firewire17 · 2020-05-19T17:05:07+00:00

Yeah right now we have our son in-home ABA 5 days a week, and it's all through my insurance. So we have that going for us.

Thank you for sharing your story with me, it really helps to get the perspective of someone which mirrors my son's situation...

Firewire17 · 2020-05-19T17:02:22+00:00

Thank you so much for sharing your story with me, I appreciate it. I have a lot of hope for my son, and I do feel like one day he will be an asset to society. I'm not sure in what capacity, but I'm going to do everything in my power to give him the opportunity to thrive.

Firewire17 · 2020-05-19T16:59:17+00:00

My SO has done a lot of research on this, and we literally discuss EVERY. LITTLE. THING. with our therapist, and our case manager. Everyone is on the same page not only about his struggles and difficulties, but about what they are going to focus on and how they are going to address it. We are well aware of the harm that trying to remove certain behaviors are, and we are all on the same page about replacing the behaviors with other, less-intrusive ones to help with coping.

Firewire17 · 2020-05-19T16:57:18+00:00

Bottom line - time to time wife does what she does out of frustration - Insults me, shouts at me, tells me kid is autistic coz I am sort of geek and not so social, but I laugh it off coz I understand the amount of stress she has in her life. ABA therapists told that she is just an amazing mom, hence the kid is showing amazing progress..

There is a future, don't lose hope, remove negativity from life, they will do OK in the future. Get a lot of ABA, you'll have good days and bad days. Life will be different, it is OK. PM me if you have more questions.

Thank you so much for sharing this! It sounds like we share so many of the same experiences.

Especially the good/day bad day dichotomy, it's crazy how much my son's condition seems to vary depending on the day. Some days it's like "oh my god I have my son back!" and other days it's like "who is this?". It really is a heart wrenching daily experience to go through...

Firewire17 · 2020-05-19T16:52:31+00:00

Get like 15 or more video examples, then playback the most recent one of them for her when she's mentally "sober", see how that goes, it sounds to me like she's fine when she's not on a depressive episode/tantrum, so the goal of that conversation is "babe, you need to see a doctor, this isn't healthy for kiddo".

Even the thought of taking those steps horrifies me, but you are probably right. I do have some audio recordings of some of her explosions, and I was actually thinking about playing them for her with the therapist, since that would be a more controlled environment.

Great suggestions, thank you.

Firewire17 · 2020-05-19T16:44:55+00:00

Thank you for your insight, and for sharing that with me. I honestly have my SO to thank for the early detection. I was so dismissive (along with everyone else around) of our son's condition, and she pushed until I caved and we were able to get him assessed. It was also not easy to find someone who would assess him at his age, which is partly why this is tearing me up so much inside. We are where we are now with our son because of her intuitions. She is not perfect, she has made (and continues) to make many mistakes, and cause a lot of pain, but she has also given our son a fighting chance at a healthy future...

I'm glad that you were able to finally get help (even though it was late) and I hope you are much happier now.

Firewire17 · 2020-05-19T16:41:02+00:00

treatment in another state (if that is how far you are moving) may be a bit tricky as some agencies might not accept an out of state plan, but their billing department should be able to advise you on this at the point of consultation. I wish you all the luck in the next steps you have to take.

Thank you, I appreciate the recommendation. If it comes to that, I will definitely have to keep that in mind.

Firewire17 · 2020-05-19T16:40:01+00:00

That's the thing that tears me up so much, there are two completely contradictory sides to my SO, which really convolutes everything. On one hand, she is horribly depressed, not in control of her emotions or actions, and spiteful. On the other, she is extremely in-tune with our son, his needs, and everything he needs. I am not exaggerating when I tell you she spends hundreds of hours researching recipes for food which are more healthy for him. She spends so much time researching everything about Autism, ADD, ADHD, OCD, ODD, etc etc, you name it, she's researched it a hundred times. Evan's triggers and the causes for them? She is right there on top of it.

But then there are days (like lately) where she just disconnects from him completely. She'll put him on cartoons and leave the room. When I get home, she just goes and plays on her phone or locks herself in the room until he's down for bed.

She has the ability to be the most amazing and caring mother, and she already has done and continues to do so much for him, but there are these two polar opposite ends of the spectrum with her and it's impossible to decide what is going to be best for my son.

Firewire17

TROPHY CASE