OP, people are being pretty tough on you, especially considering that this is the Special Needs forum. I totally get what you're saying about your DH. My DS is autistic and when he was diagnosed we realized that DH has it to. That's not at all uncommon.

DH was completely incapable of doing things such as you describe. I never could have counted on him to take the lead on any of DS's needs. He would do basic things around the house such as garbage and gradually started taking on cooking and groceries when I was working full time (luckily for myself, at home) and also homeschooling DS and taking him to therapies 3 mornings a week. He still did a completely mediocre job at that.

He has a job that he feels comfortable with and has made a hobby into a side income, but he still makes far less than is typical for the area and especially for someone with his degrees. I handled 90% of household and kids and also worked.

The trick for me was working for myself so my job was super flexible. When I tried to work in my field for someone else, it was too much.

I'm putting all of this in the past tense because both kids are in college now. I left DH when I just couldn't take it anymore (he left us a few times because the kids were just too noisy, difficult, in his way of concentrating on his obsessions) and finally I pretty much called his bluff. He's a MUCH better father and co-parent now that the kids need so much less (DD had developmental delays and needed a lot of therapy, now she has anxiety and ADHD and is in talk therapy and on meds). I do most of the emotional stuff, probably all actually but I don't know about every conversation. He handles coordinating with them for their meds refills and will actually help with transporting them. He has them now at his parents' for Thanksgiving and didn't feel the need to consult with me at all about the trip. I assume they have clothes and their meds and such, but that's mostly because they're, you know, grown adults who live independently the rest of the time. I would certainly remind them each about their meds as those have been almost forgotten in the past. Hopefully he checked on that.

Anyway, to your main point, I feel you. Don't quit your job though. Outsource everything else to someone who is functional. Treat your DH as you would anyone with a disability (not saying he has one, just saying this is a good approach) -- figure out what he CAN do without screwing it up or driving you crazy and have him take the lead on that. Outsource everything else that can be outsourced and then just do the remaining. I know that's still too much, but hang in there. It will get better. I know someone who had a neighbor who needed extra $ come by once a day and just spend an hour emptying the dishwasher, starting a load of laundry, doing the dishes from the night before, and taking the laundry out of the dryer and putting it away. It made a world of difference for my friend at a minimal cost.

And I had to laugh when someone suggested you write down your concerns and have DH share them with the doctor at the meeting. My DH never would have remembered to do that no matter how much work I put into writing down everything! However, I would think you could email the doctor/therapist in advance and handle the communication that way.

I do think that DH might be defensive because either he sees himself in your son and doesn't want a diagnosis or disability himself or else he doesn't want to see that he has a kid who has needs.

Good for you for doing therapy WITH DH. I asked for that several times and my DH refused. It definitely would have helped so keep going with that, even if it's just once a month and virtual or something. Just keeping a line of communication open about your own relationship will help.

Best of luck to you. I agree with the others not to quit your job, for your own sake if no one else's, but feel free to outsource absolutely everything you can. I mean everything!

Anonymous wrote:Op here. DC is very young (3) and has multiple health issues going on/is medically complex/fragile. It’s not just ASD, though that may end up being one of the diagnoses.

DC has been hospitalized 3 times so far this year, including one in another state for more specialized treatment.

I know there is no cure, but I do feel like if I could quit work for a few years then I could move the needle-as in, get things to a better place.

I never should have provided the ASD example above because it caused everyone to view this through the lens of mild ASD, which is NOT the situation, that’s just one layer of a very complex picture.

A big part of why I want to do this is for me. I am miserable.

Time to gut up. You don’t have the option to quit your job given your financial situation.

As people have said on this thread on others, find the options that will provide some stress relief (e.g. weekly cleaning, weekly therapy, a nanny that does food prep, etc.). Many of us are in situations that look/feel untenable. You just have to keep putting one foot in front of the other.

Anonymous wrote:Op here. DC is very young (3) and has multiple health issues going on/is medically complex/fragile. It’s not just ASD, though that may end up being one of the diagnoses.

DC has been hospitalized 3 times so far this year, including one in another state for more specialized treatment.

I know there is no cure, but I do feel like if I could quit work for a few years then I could move the needle-as in, get things to a better place.

I never should have provided the ASD example above because it caused everyone to view this through the lens of mild ASD, which is NOT the situation, that’s just one layer of a very complex picture.

A big part of why I want to do this is for me. I am miserable.

Well it's hard for people to help you if you won't tell them what's going on until 100 posts in to the thread.

Have you reached out to online groups that have parents whose kids have similar issues? That was the biggest help I have ever found... other parents.

You want us to tell you that it is OK to quit your job, and we can't. You need money and great health insurance.

I would triage and prioritize. Medical needs first and foremost.

All the other issues can be handled later.

You have been in a flurry already, moving grandparents, hiring nannies, taking FMLA. Slow down.

Op here. DC is very young (3) and has multiple health issues going on/is medically complex/fragile. It’s not just ASD, though that may end up being one of the diagnoses.

DC has been hospitalized 3 times so far this year, including one in another state for more specialized treatment.

I know there is no cure, but I do feel like if I could quit work for a few years then I could move the needle-as in, get things to a better place.

I never should have provided the ASD example above because it caused everyone to view this through the lens of mild ASD, which is NOT the situation, that’s just one layer of a very complex picture.

A big part of why I want to do this is for me. I am miserable.

Anonymous wrote:

Anonymous wrote:Has anyone been through this? I’ve always been the higher earner between DH and I. But it’s just not working and I feel so stressed I can barely function.

I think I need to quit my job so I can manage my child with SN, but I don’t know how we will survive.

I have tried everything to make this work-hiring a nanny, therapy for myself and therapy for DH and i, bringing a grandparent to live closer to us to help, trying to get DH to do more.

I even took 3 months of FMLA to get things in order for my DC, but it just made me realize that getting care for DC and managing all the therapies, insurance, doc appointments, school issues, etc. is a full time job.

I feel so depressed about this but I don’t know what to do. I tried engaging DH, I tried turning it all over to him, but he really screwed things up for DC in a way that we are still trying to correct.

I feel like I can’t quit my job because we desperately need the money but I can’t figure out how to keep working when my DC has such significant needs.

Just wondering if anyone can talk about their experiences with this.

Most “therapies” either don’t really work or are things you can do organically at home. Your (understandable) anxiety is running you ragged. Try to chill and realize that, drop the therapies, do it at home and enjoy your family time more.

This.

There's no "fixing" ASD. You can medicate ADHD.

So adding an ASD label when you have the other DXes won't add much, unless you want ABA.

And with that, an adult just needs to be in the house. A nanny is fine.

Anonymous wrote:Has anyone been through this? I’ve always been the higher earner between DH and I. But it’s just not working and I feel so stressed I can barely function.

I think I need to quit my job so I can manage my child with SN, but I don’t know how we will survive.

I have tried everything to make this work-hiring a nanny, therapy for myself and therapy for DH and i, bringing a grandparent to live closer to us to help, trying to get DH to do more.

I even took 3 months of FMLA to get things in order for my DC, but it just made me realize that getting care for DC and managing all the therapies, insurance, doc appointments, school issues, etc. is a full time job.

I feel so depressed about this but I don’t know what to do. I tried engaging DH, I tried turning it all over to him, but he really screwed things up for DC in a way that we are still trying to correct.

I feel like I can’t quit my job because we desperately need the money but I can’t figure out how to keep working when my DC has such significant needs.

Just wondering if anyone can talk about their experiences with this.

Most “therapies” either don’t really work or are things you can do organically at home. Your (understandable) anxiety is running you ragged. Try to chill and realize that, drop the therapies, do it at home and enjoy your family time more.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, with 325 you can hire a wife; having less money is not going to help.

Not a wife, but a "special needs mom". I quit my job because I was earning less and had less earning potential, but in my waiting room travels I met a family where the mom was a famous lawyer and her partner was (I think) an "underperforming" step parent. The nanny was an older woman who had an adult special needs son who was mostly stable in a group living situation with a job and supports. Obviously the mom still had to be there for some initial appointments/evals and things, but the nanny understood enough about what was going on that she was effective advocate for the child and liaison between the providers and the mother. I was super impressed with her...she really seemed to give it her all emotionally but also had good boundaries (like she joined in the waiting room talk but never bad mouthed her employer or the step parent).

This is extremely rare. The famous lawyer must have had contacts that landed her a nanny like this.

It's not as rare as it is expensive. You can get a SN aware nanny, and even a former RBT or SpEd teacher - they post on care dot com and sitter city. These are not unicorns, but you would need to screen carefully to make sure it's a match with your family, and then pay through the nose. Another option is an Au Pair - there are some agencies that specialize on placing slightly older au pairs with SN experience and/or OT/PT credentials from their home country.

Do you know the names of these au pair agencies?

Anonymous wrote:

Anonymous wrote:Read Mr. Money Mustache. There is valuable information on that site on how to get by on less money. The biggest is to move to a cheaper part of the country. Sell 1 car etc.

You can buy a home for under $200,000 in many parts of the US for what you pay 1.5 million in the DMV

Except that a cheaper part of the country may not have access to service providers that their child needs, or their insurance doesn't cover the one provider that's in a 40 mile radius.

Moving is not realistic for most people.

This. My friend moved to NYC from Colorado where she and her family were very happy because one of her DCs needs lot of therapies and services. They can afford a lot less in New York and miss their outdoorsy lifestyle, however the DC is thriving, so they will stay put.

Anonymous wrote:

Anonymous wrote:Didn’t read every comment but please don’t quit job. I am unable to work due to illness. DH undiagnosed asd , son diagnosed. DH pulls the exact same garbage… lots of ‘nothing to see here!’ ‘Everything is fiiiiinnne’ when we see therapists doctors etc. it’s not fine, it’s a hot mess. Many providers seem completely used to the undiagnosed spouse strongly disagreeing with the wife. The thing is when teachers and therapists are same behaviors that kinda helps you out. Please don’t quit your job. I am completely dependent on DH for money, which he likes to restrict from time to time as a power play. It is really no way to live. If your spouse might have a similar asd tendency you do NOT want to rely on that person for your livelihood

Np

Amen

This OP. If you can't rely on him for basic household or caretaking tasks why would you put all of your survival needs and ability to feed your kid in that basket. That is where I think your own unmanaged anxiety is impacting your thinking skills. And getting back in is almost NEVER where you left and you may need that money for a SN trust. Stop with the focus on the DH, consider him SN too and organize help and systems accordingly. If you feel overwhelmed, also be screened for ADD and executive functioning.

Hang in there. As a SN mom the marathon lasts our whole lives, you need to pace yourself and maximize financial resources in case your child is not fully self supporting one day.

Back to original Q: I am 9 months into a “gap year” that we financially planned for. It has been amazing. I have the patience and persistence and focus needed to be a better SN mom. It rocks.
It’s not sustainable long term but given how frickin amazing it’s been, I will absolutely only do a part time job, we will make it work.
I am much more proud of the job I’m doing as a mom in this last year. I wish this could last and I wish every SN parent who wanted/needed it could have the break.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Tell us more about this: I tried turning it all over to him, but he really screwed things up for DC in a way that we are still trying to correct.

Op here. DH is unable to talk about the challenges we have with our child. So when he goes to doctors appointments with DC, instead of describing the problems, he talks about how great DC is.

As a result, when trying to get diagnoses or insurance coverage or support from school in the IEP, I’m battling all this documentation that says DC is GREAT and there are no problems. So for example, when making the case for an ASD diagnosis, the docs are confused because DH has been saying DC is fine at all the appointments.

This has created massive delays in getting medication, diagnosis, therapies, etc.

OP, respectfully, how is it that anyone needs to "make a case" for ASD? That's not how it's diagnosed. There is ADOS-2 and parent questionnaires. If you are talking about referrals - at your income, f&%ck it and get a private eval if that's what it takes, if you think referral will be impossible to get given what your DH told your pediatrician.

In this day and age, in this country, it's not that hard to get an ASD evaluation. I don't mean it as a slight to you, it's just your child is either on the spectrum or not, and the tests will show it, regardless of what Dad misrepresented. Don't make it overcomplicated. If the record is too mixed, change providers and control the narrative.

Unless you are a doctor, there is little chance you can get back to same earning potential, especially in the Midwest. You will not be able to live on 75K, with a SN child and save anything for the child's future or your retirement. Look into hiring a case manager as a private concierge service, if your child is too old for nannies.

When it's a borderline case or the child is young enough that any diagnosis would be tentative, that's when parent input can matter. Whether delivered by questionnaire or some other way. If OP's DH is filling the questionnaire with denial and spin, that's going to potentially influence the outcome.

Sadly, providers are all too familiar with dad-denial and dads on the spectrum, so they often take that into account.

They diagnose now as early as 18 months, and ADOS is a robust test. If OP's DH messed up the questionnaires she can re-do them, but they are secondary. I think she is overthinking this by several degrees. Just go and do the testing, don't "make a case".

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, with 325 you can hire a wife; having less money is not going to help.

Not a wife, but a "special needs mom". I quit my job because I was earning less and had less earning potential, but in my waiting room travels I met a family where the mom was a famous lawyer and her partner was (I think) an "underperforming" step parent. The nanny was an older woman who had an adult special needs son who was mostly stable in a group living situation with a job and supports. Obviously the mom still had to be there for some initial appointments/evals and things, but the nanny understood enough about what was going on that she was effective advocate for the child and liaison between the providers and the mother. I was super impressed with her...she really seemed to give it her all emotionally but also had good boundaries (like she joined in the waiting room talk but never bad mouthed her employer or the step parent).

This is extremely rare. The famous lawyer must have had contacts that landed her a nanny like this.

It's not as rare as it is expensive. You can get a SN aware nanny, and even a former RBT or SpEd teacher - they post on care dot com and sitter city. These are not unicorns, but you would need to screen carefully to make sure it's a match with your family, and then pay through the nose. Another option is an Au Pair - there are some agencies that specialize on placing slightly older au pairs with SN experience and/or OT/PT credentials from their home country.

Anonymous wrote:

Anonymous wrote:OP, with 325 you can hire a wife; having less money is not going to help.

Not a wife, but a "special needs mom". I quit my job because I was earning less and had less earning potential, but in my waiting room travels I met a family where the mom was a famous lawyer and her partner was (I think) an "underperforming" step parent. The nanny was an older woman who had an adult special needs son who was mostly stable in a group living situation with a job and supports. Obviously the mom still had to be there for some initial appointments/evals and things, but the nanny understood enough about what was going on that she was effective advocate for the child and liaison between the providers and the mother. I was super impressed with her...she really seemed to give it her all emotionally but also had good boundaries (like she joined in the waiting room talk but never bad mouthed her employer or the step parent).

This is extremely rare. The famous lawyer must have had contacts that landed her a nanny like this.

This was posted before.

what are the actual needed therapies start there

yes it can be hard to get those setup but once you do it take a while to go and then evaluate how it is going

your stress feeds your impatience which is an undercurrent that your kid picks up on and feeds the behaviors

be honest with yourself deep down do you hope to “therapy”out the diagnosis?

For the IEP hire someone to assist you on this

Setup the most needed services and then let go for a while

and I have been there and no we never secured the ASD diagnosis bc it was too borderline. We said plenty of great things about our kid but their behaviors, teacher observations, and testing revealed deficits.