Have you or spouse cut back at work to accommodate needs of SN child?

[Anonymous]

Anonymous wrote:We're struggling with the same decision. Our child with ADHD (even with meds) is tough to manage on a day to day basis, homework battles, two full time jobs, no family around, travel, etc. We also feel so guilty about the younger child (neuro-typical) whose needs are often put on the back burner while we deal with the older child. In our situation, it would be DH who would quit his job. We would need to downsize from our SHF to a townhouse, which we actually don't mind as we have an older SHF that requires a lot of work with yard work, etc. Once we make the decision, we were going to explain to the children that we are making this decision so we have more time for the family, don't have to rush as much, don't need to put them in full time camp (which they both don't like). While this would be the right decision for the children and our sanity, it's not an easy decision and we're torn.

Make sure your downsizing takes into account retirement and college savings. We did this, and now it is very hard for my husband to get back in teh workforce.

Our older child is close to college age, and we will need financial aid. The college financial aid formulas all are penalizing us $40K / year, for the 'luxury' of a SAHP.

[Anonymous]

I was planning to go back full-time when our young teen got sick. It's been 3 years so far and I don't plan on going back before he goes to college which is currently looking like a probability if he stays in remission.

PP above who is moving to a TH, I think you will be much better off. Other families who have kids/family members with the chronic illness our DS has have done that and it does make things much easier not having to deal with yards/as many repairs.

It is a tough decision and forces many of us to completely re-calibrate not only our jobs but our lives and our expectations for our kids and their futures as well as how it affects our healthy/neuro typical kids.

[Anonymous]

One thing to keep in mind OP is several of my friends reduced their work from full time to part time but their employers expected them to produce the same amount of work. One of them actually quit and took another job part time.

[Anonymous]

It is so frustrating that our society doesn’t do more to allow people to work part time. What a waste of human potential that we too often have to choose to quit entirely and ruin our careers because there’s no workable way to make it work part time.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I am a PP above. While I'm saddened to hear all the other stories, I am a bit relieved because it has been a huge blow to my self-esteem that I ended up leaving the workforce. I had a job I loved that was like a calling for me and I hoped to be able to do it for the rest of my life. I always wonder if I am some kind of weak or lazy person that I couldn't do it all, and I know some other people see me that way, even though I didn't see any other alternatives at the time and my choice panned out in terms if positive impact on kids stability.

I am also a PP. you are not alone. I never in a million years planned or wanted to be a SAHM but here I am. I have had a depression and major resentment over it, gone to therapy, and just soldier on, for my kids. But I definitely wish I still had my career.

+1. I seem to remember saying “I will never be a SAHM.” To my then fiancé (now DH). I have now been a SAHP for 15 years. Empty nest as of last fall, but now we have the end game in sight so no time to resurrect a career. We are hoping for DH to find an overseas assignment as a capstone before his retirement.

It took several years for me to get the cadence of SAH, but I never really became a fan. I was a much more natural WOHP. It did come in handy when my parents were ailing too. We are on the cusp of seeing our boys successfully launched and looking back having one of us SAH seemed to be a good choice. Both have special needs that required many more years and more intense parenting than our neurotypical counterparts. One is ASD/HFA and one is LDs/ADHD.

[Anonymous]

Anonymous wrote:It is so frustrating that our society doesn’t do more to allow people to work part time. What a waste of human potential that we too often have to choose to quit entirely and ruin our careers because there’s no workable way to make it work part time.

I totally agree with this.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I quit, a year before I was going to get my PhD. This ruined my career.
My young toddler was not drinking or eating anything during the entire day at daycare, and needed intensive therapies.

I got my J.D. but was unable to take my job offer at a big firm because of the time committment involved and the inability/unwillingness of my now exDH to take on any share of the work related to the special needs. Spending time at home absolutely was key to getting SN kid on a track to independence, but now that he can be independent, I am finding it impossible to find any kind of work that has a reasonable financial future. I drained my savings for SN school and therapies, so I am looking at a very grim financial future. Thankfully, I have a safety net with my family of origin. ExDH basically walked away from any responsibilities.

This country has got to value the work of caregivers --absent marriage or employment, it is very difficult to get healthcare. We also lose credits for social security, retirement benefits, etc.

Same here in many aspects. Though DH did help our son was so severe for the first 10 years of his life it was very stressful so even with that help I was still exhausted and overwhelmed 24/7 and so was he. We were not successful in raising an independent person but compared to how severe our son used to be we have been very successful in that he is able to function in the community in various activities. He is also pretty social considering his disability which is a miracle. So, we saved our kid from a lifetime of institutionalization which is great - he’s very happy.

I had advanced degrees in engineering and have not been able to renter the work force. We are also penniless and deeply in debt- it’s crazy. We have family that has money as well but no one has helped - we are hoping to be willed money someday.

If you can work part time at all if highly recommend keeping that ‘foot in the door’.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We're struggling with the same decision. Our child with ADHD (even with meds) is tough to manage on a day to day basis, homework battles, two full time jobs, no family around, travel, etc. We also feel so guilty about the younger child (neuro-typical) whose needs are often put on the back burner while we deal with the older child. In our situation, it would be DH who would quit his job. We would need to downsize from our SHF to a townhouse, which we actually don't mind as we have an older SHF that requires a lot of work with yard work, etc. Once we make the decision, we were going to explain to the children that we are making this decision so we have more time for the family, don't have to rush as much, don't need to put them in full time camp (which they both don't like). While this would be the right decision for the children and our sanity, it's not an easy decision and we're torn.

Make sure your downsizing takes into account retirement and college savings. We did this, and now it is very hard for my husband to get back in teh workforce.

Our older child is close to college age, and we will need financial aid. The college financial aid formulas all are penalizing us $40K / year, for the 'luxury' of a SAHP.

In what part of the formula do they add 40 k for a SAHP and which universities? The one we are dealing with claims they don’t do that (at least for special circumstances).

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I quit, a year before I was going to get my PhD. This ruined my career.
My young toddler was not drinking or eating anything during the entire day at daycare, and needed intensive therapies.

I got my J.D. but was unable to take my job offer at a big firm because of the time committment involved and the inability/unwillingness of my now exDH to take on any share of the work related to the special needs. Spending time at home absolutely was key to getting SN kid on a track to independence, but now that he can be independent, I am finding it impossible to find any kind of work that has a reasonable financial future. I drained my savings for SN school and therapies, so I am looking at a very grim financial future. Thankfully, I have a safety net with my family of origin. ExDH basically walked away from any responsibilities.

This country has got to value the work of caregivers --absent marriage or employment, it is very difficult to get healthcare. We also lose credits for social security, retirement benefits, etc.

Same here in many aspects. Though DH did help our son was so severe for the first 10 years of his life it was very stressful so even with that help I was still exhausted and overwhelmed 24/7 and so was he. We were not successful in raising an independent person but compared to how severe our son used to be we have been very successful in that he is able to function in the community in various activities. He is also pretty social considering his disability which is a miracle. So, we saved our kid from a lifetime of institutionalization which is great - he’s very happy.

I had advanced degrees in engineering and have not been able to renter the work force. We are also penniless and deeply in debt- it’s crazy. We have family that has money as well but no one has helped - we are hoping to be willed money someday.

If you can work part time at all if highly recommend keeping that ‘foot in the door’.

The bolded part is a huge accomplishment. Sounds like it's been a rough road, hang in there. You've done amazingly well.

[Anonymous]

I left altogether as well. Definitely a career-ender but I don't regret it.

[Anonymous]

Anonymous wrote:I quit, a year before I was going to get my PhD. This ruined my career.
My young toddler was not drinking or eating anything during the entire day at daycare, and needed intensive therapies.

I had a very difficult eater too. It was so hard getting her to eating solid food full-time. I had to find a SN daycare to help. Never thought it would end. Hugs.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I quit, a year before I was going to get my PhD. This ruined my career.
My young toddler was not drinking or eating anything during the entire day at daycare, and needed intensive therapies.

I got my J.D. but was unable to take my job offer at a big firm because of the time committment involved and the inability/unwillingness of my now exDH to take on any share of the work related to the special needs. Spending time at home absolutely was key to getting SN kid on a track to independence, but now that he can be independent, I am finding it impossible to find any kind of work that has a reasonable financial future. I drained my savings for SN school and therapies, so I am looking at a very grim financial future. Thankfully, I have a safety net with my family of origin. ExDH basically walked away from any responsibilities.

This country has got to value the work of caregivers --absent marriage or employment, it is very difficult to get healthcare. We also lose credits for social security, retirement benefits, etc.

+1

[Anonymous]

OP here, thank you all very much for all of the candid, thoughtful replies. I am meeting with my boss next week so keeping fingers crossed.

I talked with an employment attorney friend about FMLA and am going to at least try to get reduced schedule if I can. Right now, for example, we need to find a new physical therapist, and the three we have been referred to all have wait lists. So now I am working on the three 10-15 page intake packages to get on those wait lists (even though we have seen two of the providers in the past, it has been more than six months...), and it is not 100% clear that I can use FMLA time to fill them out.

Again, thank you for sharing your experiences. It is helpful to remember that we are not unique or inadequate in being unable to make things work with two working parents.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:We're struggling with the same decision. Our child with ADHD (even with meds) is tough to manage on a day to day basis, homework battles, two full time jobs, no family around, travel, etc. We also feel so guilty about the younger child (neuro-typical) whose needs are often put on the back burner while we deal with the older child. In our situation, it would be DH who would quit his job. We would need to downsize from our SHF to a townhouse, which we actually don't mind as we have an older SHF that requires a lot of work with yard work, etc. Once we make the decision, we were going to explain to the children that we are making this decision so we have more time for the family, don't have to rush as much, don't need to put them in full time camp (which they both don't like). While this would be the right decision for the children and our sanity, it's not an easy decision and we're torn.

Make sure your downsizing takes into account retirement and college savings. We did this, and now it is very hard for my husband to get back in teh workforce.

Our older child is close to college age, and we will need financial aid. The college financial aid formulas all are penalizing us $40K / year, for the 'luxury' of a SAHP.

In what part of the formula do they add 40 k for a SAHP and which universities? The one we are dealing with claims they don’t do that (at least for special circumstances).

i'm the PP. In our situation, the SN child is now in high school and functioning well enough to be headed to college (Yay - intensive therapy and early intervention worked).

The problem is the spouse who stepped off the career track is having a difficult timing getting back to sort of position that pays more than minimum wage. The colleges are not recognizing our situation as a 'special circumstances' but simply regard him as a stay at home parent by choice.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I quit, a year before I was going to get my PhD. This ruined my career.
My young toddler was not drinking or eating anything during the entire day at daycare, and needed intensive therapies.

I got my J.D. but was unable to take my job offer at a big firm because of the time committment involved and the inability/unwillingness of my now exDH to take on any share of the work related to the special needs. Spending time at home absolutely was key to getting SN kid on a track to independence, but now that he can be independent, I am finding it impossible to find any kind of work that has a reasonable financial future. I drained my savings for SN school and therapies, so I am looking at a very grim financial future. Thankfully, I have a safety net with my family of origin. ExDH basically walked away from any responsibilities.

This country has got to value the work of caregivers --absent marriage or employment, it is very difficult to get healthcare. We also lose credits for social security, retirement benefits, etc.

Same here in many aspects. Though DH did help our son was so severe for the first 10 years of his life it was very stressful so even with that help I was still exhausted and overwhelmed 24/7 and so was he. We were not successful in raising an independent person but compared to how severe our son used to be we have been very successful in that he is able to function in the community in various activities. He is also pretty social considering his disability which is a miracle. So, we saved our kid from a lifetime of institutionalization which is great - he’s very happy.

I had advanced degrees in engineering and have not been able to renter the work force. We are also penniless and deeply in debt- it’s crazy. We have family that has money as well but no one has helped - we are hoping to be willed money someday.

If you can work part time at all if highly recommend keeping that ‘foot in the door’.

The bolded part is a huge accomplishment. Sounds like it's been a rough road, hang in there. You've done amazingly well.

I know, it is and it was totally worth it. I basically gave up ‘myself’ to do that, but it’s not bad as far as life achievement go I guess.