OP, your DH is likely ASD + ADD himself. Resenting that is not going to "fix" him any more than you will "fix" your son, no matter what you do.

Stop talking about feelings and start lining up support. Outsource all household tasks for now, get a housekeeper. Get a SN AP or ABA therapist or ??? where you are to work with DS and take him to appointments.

Get medication to manage your anxiety. I've been in exactly your shoes and that is what was needed. It also greatly benefited my parenting. And drop the rope re: "fixing" DS, ASD is not "fixable." See a financial planner and set up a special needs trust. Take a deep breath.

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.

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.

what are both your incomes?

Anonymous wrote:

Anonymous wrote:Op here. Not interested in posting every detail of my child’s diagnoses, marriage, etc.

Can anyone talk about quitting their job because you did not feel it was possible to work while having a kid with SN? Was there a time period or age when it felt more manageable? Did you try, for example, taking 2-3 years off and did it move the needle? Did going back feel manageable after taking a break?

Ok but it's hard to be helpful if you won't tell anyone anything. So your child has a condition that's very time-consuming, and your DH also has some sort of mystery impairment that renders him useless to help in any way. Oke doke. FYI people here are not that sympathetic to slacking DHs, nor to in-denial DHs, nor to diagnosis-resisting DHs. People may tell you to reach a place of acceptance with your DH, but they're not going to stop telling you that he's a big part of the problem.

The time period or age depends on your child's development and your circumstances in general. For me, it was easier when my child started Kindergarten and became entitled to the accomodations and services provided in the public school system. (We are not in an area with free preschool). Not sure what age that would happen for your child where you live. Because then I didn't have to do, for example, private speech therapy because it was handled at school. And my DC was in a self-contained classroom and I had no fear of expulsion-- in private preschool I was constantly afraid of expulsion. It got easier in some ways as my DC grew older and achieved milestones like potty training, being dry all night, etc. But other things in life got harder-- my parents aged, my DC struggled more in puberty, etc. It just depends.

I don't know what you mean by "move the needle". Honestly it sounds like you hope that if you work hard enough you can fix or cure your DC. And I would suggest you need to disengage from that hope and accept your DC as they are. Or you're in a bargaining phase of like "If I quit work for 2 years, I'll get X outcome in return". And I'm here to tell you it just doesn't work that way.

If things are really as bad as you describe, then your DC may not be self-supporting as an adult. So you need to see a financial planner and discuss special needs trusts etc. before you even consider quitting your job.

All of this, OP. Please don't make the mistakes I did. It can be impossible to get back at the same level. I too thought that if I just did enough, we'd end up in a different place, but bargaining is not reality. Consider that your DH has his own executive function issues and you may have untreated anxiety. Kids with multiple diagnoses rarely have 2 neurotypical parents ime.

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).

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

Anonymous wrote:Op here. Not interested in posting every detail of my child’s diagnoses, marriage, etc.

Can anyone talk about quitting their job because you did not feel it was possible to work while having a kid with SN? Was there a time period or age when it felt more manageable? Did you try, for example, taking 2-3 years off and did it move the needle? Did going back feel manageable after taking a break?

My MIL quit teaching to help her dyslexic and HFA child. fIL also had HFa but “quit” at age 50 and so they Penny pinched their way through life but had 15 years of stock shares from him working plus around age 55 inherited $1-2m and bought a nicer house.

The dyslexic HFA son still lives at home, single, age 40. He tired various degrees and job tracks but would mess up and get fired. The FIL wanders around the house or just watches you.

I wouldn’t quit my career or job for this Op. the pay out may never be there and you lose your adult time, conversation skills, etc.

Just do your best, detach, talk with friends. It’s tough but put yourself higher.

Anonymous wrote:Op here. Not interested in posting every detail of my child’s diagnoses, marriage, etc.

Can anyone talk about quitting their job because you did not feel it was possible to work while having a kid with SN? Was there a time period or age when it felt more manageable? Did you try, for example, taking 2-3 years off and did it move the needle? Did going back feel manageable after taking a break?

I would not do this, OP, because I think divorce may be in your future. Your DH likely is also neurodivergent. I'd factor that in and outsource as much as possible. Your child may not ever be all that different, I did all the therapies too, and DC still is autistic, anxious and has ADHD. $ is key for survival and paying for the therapies. Once you step away you will not be able to go back at the same level.

I'd think of yourself as a single mom and organize your life accordingly, I think your stress level would go down. You need to be practical. Get recs for a good ed consultant and get help improving the school situation.

Get a nanny who will take child to appointments and also clean, do laundry and do dinner prep while child is at school. Pay them well since your child is difficult.

Hang in there. But understand there is not going to be some day when it is all quite different if your child is this challenging. It's a marathon, with a SN kid, for your whole life. My child made no significant improvements by me sitting in the waiting room at OT rather than a caregiver.

OP, I am in your shoes. Don't quit. The burn out is very real, but it will not always be like this. It does get more routine and easier with time.

I don't know your child's age because I haven't read all of the responses. But it does get easier, first 12-18 months from the diagnosis are the most intense. Also the younger the child, the more intense it is. Eventually, once you have things on track, it becomes more routine. You may need to hire either a SN-knowledgeable nanny or an RBT aide full time for your kiddo to do day-to-day shuttling to appointments. It may cost a ton, but in the long run you're saving your earning potential.

Also, you might need SN school for your child and for that your need $$. These schools range in terms what severity of needs they support and what services are integrated (many are).

Before anyone says you can sue the school district for placement - not all cases are clear cut. My child could be mainstreamed with IEP, but I cam choosing to put him in a private for a bunch of reasons, because I believe he will served much better there. For many families, you need a dual income to pull it off...

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.

Get your spouse a neuropsychology test.

Don’t count on him

Many doctors are reluctant to hand out ASD so will do ADHD until more symptoms present in tween and teen years. Sorry. This happened with our child and we had a Dx’d asd/bipolar father. Adhd and asd are often comorbid too.

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.

Ugh.

I’m sorry.

I too have an in denial spouse who cannot advocate well, and hides/omits truths from his doctor and the child’s

I need to be dialed in or send lengthy notes ahead of time- to the doctor and the husband or caretaker who takes the child. Husband is often so late to appts I have nanny or grandpa do it if I cannot

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.

Thinking out of the box here, and have not read the thread:

Can you try nesting? You have the kid one week, spouse the other week?

Is this a genetic mental disorder where your spouse may also suffer from it to some degree? And thus is a more difficult coparent and parent period.

OP - I feel your pain; my DH is unable to manage our kid's health issues too. A few years ago, my DH took a leave of absence as our DS's needs were overwhelming. To make a long story short, I still managed all of the appointments (scheduling, paperwork, going to appointments, including many that were far away). For whatever reason, my DH simply could not face the issues. I don't know. I've never figured it out. We had the opposite issue; he felt the sky was falling when he spoke with some drs and with others he said nothing was wrong. He viewed what I saw as normal boy behavior as clear defiance/emotional issues and yet overlooked what I viewed as very significant indicators of a medical issue.

Fast forward to now, we have finally come up with a solution. I still do 75% of the medical work, but we've allocated in other ways. For example, I schedule ever single medical appointment, but he takes the kids to all dental, ortho, and OT appointments. I do the initial consults but he does the day-to-day. He fills out every single school/camp/insurance form. We do all narrative intake forms (e.g., describe the problem) together. I think it's important for drs. to hear both sides of the story - I feel like my DH tends to overstate emotional and understate medical, and he thinks I do the opposite, and I think both of our perceptions and observations can inform the dr. BUT, my DH isn't saying everything is rosy.

I take a ton of time to help my DS with homework, organization, tutors, getting him to and from places (and we have a nanny). I'm able to do this b/c my job is flexible. I work nearly every Saturday and Sunday; I work after the kids go to bed, etc. BUT, I never cook, clean, or take the trash out (I actually like cooking, but I'd rather be with my kids, so I gave it up). I've outsourced as much as possible and my house isn't as tidy as I would like. We eat a lot of tacos, but this is the only way we've gotten it to work. It took us 12 years to get here...But we did it.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I wonder if OP is dealing with severe behaviors at home & school on top of a demanding job - that can indeed start to seem impossible especially if the coparent is really dropping the ball. If OP is using significant time during the day to deal with school, insurance, therapists, then comes home to ALSO have to do most of the cooking/cleaning WHILE dealing with a tantruming rigid kid … then that could be completely overwhelming if she also has a difficult job. I’ve been in varieties of that scenario and really only get by because my job is 100% remote and flexible and takes less than 40hrs/week. if OP’s job is at all demanding it could seem impossible.

Maybe OP's low-earning DH can do the cooking/cleaning! Oh wait we're not allowed to talk about that completely obvious solution.

PP here. If her DH is anything like mine he doesn’t do cooking or cleaning …

Op Here. They are mocking me for not wanting to get into why that’s not a solution to my problems. They think if I just talk to DH, or take him to therapy, or stop doing things, or divorce him that somehow the dishes/laundry/trash/cooking will get magically get done.

OP, I have a non-participating circus (now ex) husband. I can relate to your post in that sense and in the sense that DH was not connected enough to see/articulate any problems. No amount of talking, begging, threatening would get him to change.

I did quit my job with 2 kids each of whom sound less severely affected than your DC. I would absolutely advise against it. While I was able to help my kids, it wrecked my income earning power and you need to have $$ with an SN child. I was fortunate that I had $$ support from family of origin.

I agree with others who say hire out more - house care and childcare/driving to therapies, and connect with therapy providers and doctors by phone or email.

Also, consider change jobs if it gives you more flexibility or long term security if the pay decrease is marginal. But absolutely do not quit completely.

Don't believe that if you only do it for X years you can get to a better place. There is always some emergency even when things get better.