Special needs child and managing career

[Anonymous]

Excellent and really personal post from prior poster because for some the aspect of providing care for a son or daughter with a disability does not end at age 18, 21 or 39, and it is important to keep a personal sense of self and life perspective at any age. The hardest thing is that there is no path to follow in such a circumstance and you grow to be grateful to those who are in your younger, teen or adult child's life. For us it is the wonderful college students who have done weekly and summer activities with her year-round, her young piano teacher who has understood how making her way through a selection is hard mental work and yet very satisfying to her. Then there is the Aramark Dining Hall which has employed her part-time for 17 years and enabled her to return to her job in the dish room after an 18-month hiatus due to her disability with fewer hours to suit her stamina. There is the senior center in our community where she thrives as a weekly volunteer covering the tables of a coffee cafe located there. There are the community programs of Therapeutic Recreation, Special Olympics and Best Buddies which also give her social and recreation outlets. These are all aspects for her of a full lifestyle and for us a supportive network in raising her.

[Anonymous]

Op - I have the same issue. High six figures - kid with adhd and maaayne some asd (mixed evals). Also a little odd. I don’t know! I think about this all the time. Mine is doing well - academically great, lots of friends at school. So much better. I reason - hey I can afford to have him at a private that focuses on social emotional development and I can meet with and email them whenever I want, I can afford a country house where we go and he can run around and sled and ski and be in the pool. I can afford to pay out of pocket for an awesome psychiatrist who has him on a great regimen that has taken a long time to perfect. If he has problems down the road I can spend money on experts. Can I give him ME after school? No. Can I be totally selfless on weekends? Also no. Would that be better? Maybe! I think the q is really - would you be an a really great and happy mom if you gave up work and would you be happy to devote your life to getting him to the best place? Or would you be anxious and depressed and rather have the break in the day to not have to do that and be able to spend on the things your dc needs?

[Anonymous]

Anonymous wrote:For context, I manage a team of 10 attorneys. I’m a mid level manager who has to deal with the BS from above and below of returning to work. My kid has significant intellectual and physical disabilities and also has medical issues that requires a cocktail of multiple daily medications and multiple rescue medications. It literally took 9 months to transition my kid from daycare to two preschools, between finding a regular preschool that would actually accept her, negotiating her IEP for her part time preschool through the public school system, figuring out transportation, and finding a private duty nurse too travel with during school. In addition to being the primary breadwinner, I also manage all of the mental load and projects at home (DH is the primary on childcare and cooking my kid’s very strict medically prescribed diet, and this is a fair division of labor). So I get where you’re coming from and have absolutely been in the trenches myself.

I actually think that you should be brainstorming how to help you rather than focusing on how to help your kid. As PP mentioned, the most important thing is actually your health. Athena stress of parenting a kid with special needs/disabilities, and the demands of your job are deeply undermining your health. I don’t think that quitting your job is going to make as big a difference as you think it will, because if you don’t know how to take care of yourself now, you’re not going to miraculously be better at it with work out of the way. Like are you somehow so much better at taking care of yourself on a weekend? If you aren’t, you’ve probably lost track of how to support yourself.

I was really struggling at both home and at work until I prioritized myself first. It was slow going, and is still a work in progress. I spent last year focusing on therapy - both individual therapy for me and my husband and couples therapy together. Raising a kid with disabilities is so emotionally hard and stressful, and I think legitimately traumatic. Working with someone to process all of the emotions and trauma was tremendously helpful, and necessary to feel less trapped in my life. An essential first step before I had the bandwidth to really focus on how much my poor sleep, poor eating habits, lack of exercise, and stress were all undermining my health.

This year I’m focusing on my health (while also continuing therapy, albeit less frequently than before - just 1x/month). I started with a two week vacation away from work and parenting. The first week was a trip with my husband, while our kid stayed home with my in laws. The second week was a yoga retreat. Both weeks were at all inclusive style hotels with healthy and nutritious food and required no work from me. Someone else took care of all the details, which was glorious. By the end of my second week, I actually felt a) human and b) like myself, which I realized I hadn’t really felt since before having a kid. It was shocking to realize that I’d forgotten what it feels like to be me.

I’ve also been working with an Ayurvedic health counselor at the Vedic Center in Rockville since January. They help coach on a variety of lifestyle habits, and they also offer spa like treatments. Anyways, with their help, I’ve been much more consistent with getting enough sleep and eating much better, both of which completely deteriorated in the last four years of dealing with my daughter’s needs. I got an Apple Watch last year and learned that I was consistently only getting 6 hours of sleep and over time, that’s too little sleep for me and I was just run ragged. Always tired, always stressed, and so easily angered. I couldn’t manage to reset the cycle on my own, but the work I’ve been doing with the Vedic Center has been moving me in the right direction, slowly but surely. And their Abhyanga hot oil massage treatment - it is truly the most transformative experience. I’ve always been one to treat myself well - pre kid I had a massage every month, and while pregnant I had a massage every week for the last two months. And I have never felt as good as I have after their Abhyanga treatment as I have, literally ever in my life. I can’t tell you how much less stressed out I feel before and after treatment.

Anyways, now that I’m starting to actually work on these issues and prioritize myself and my health, you know what’s so much easier to deal with? Both parenting and work. It really is true that when you’re supported, you’re able to support others.

I should say, I’m able to do this stuff because I’m using my leave. Work got so bad that I was talking openly about quitting with pretty much everyone at work, including my immediate boss and her boss, and they’ve both encouraged me to take leave. They’re the reason why my one week yoga retreat became a two week trip. I’m taking a lot of sick and annual leave for my appointments at the Vedic center. I’ve accumulated so much leave from never going anywhere during the pandemic, and I do think there’s something to be said about the number of people who quit jobs because they’re burned out, but still have a lot of leave they weren’t taking. It’s okay to take leave because you’re tired. It’s okay to take leave and stay at home while your kid goes to school and your partner goes to work. It’s okay to take leave and just sleep or decompress or go for a walk. All totally valid ways to use your leave.

Also, it’s totally okay to quit your job too. Or go part time if that’s what you think you need to feel better. It’s totally okay to prioritize doing whatever you need to do to feel better because you matter too, and what you need is also important. And just as important as what your kid needs.

Pp - I am the pp above and I am crying and cheering for you because everything you said feels so true and so right. I am so happy that you are taking this time for yourself and I am taking a leaf out of your book bc I am so run ragged now and I was run ragged when I didn’t work for 5 months (not on purpose) and I can’t remember what it feels like to be me either.

[Anonymous]

Anonymous wrote:

Anonymous wrote:For context, I manage a team of 10 attorneys. I’m a mid level manager who has to deal with the BS from above and below of returning to work. My kid has significant intellectual and physical disabilities and also has medical issues that requires a cocktail of multiple daily medications and multiple rescue medications. It literally took 9 months to transition my kid from daycare to two preschools, between finding a regular preschool that would actually accept her, negotiating her IEP for her part time preschool through the public school system, figuring out transportation, and finding a private duty nurse too travel with during school. In addition to being the primary breadwinner, I also manage all of the mental load and projects at home (DH is the primary on childcare and cooking my kid’s very strict medically prescribed diet, and this is a fair division of labor). So I get where you’re coming from and have absolutely been in the trenches myself.

I actually think that you should be brainstorming how to help you rather than focusing on how to help your kid. As PP mentioned, the most important thing is actually your health. Athena stress of parenting a kid with special needs/disabilities, and the demands of your job are deeply undermining your health. I don’t think that quitting your job is going to make as big a difference as you think it will, because if you don’t know how to take care of yourself now, you’re not going to miraculously be better at it with work out of the way. Like are you somehow so much better at taking care of yourself on a weekend? If you aren’t, you’ve probably lost track of how to support yourself.

I was really struggling at both home and at work until I prioritized myself first. It was slow going, and is still a work in progress. I spent last year focusing on therapy - both individual therapy for me and my husband and couples therapy together. Raising a kid with disabilities is so emotionally hard and stressful, and I think legitimately traumatic. Working with someone to process all of the emotions and trauma was tremendously helpful, and necessary to feel less trapped in my life. An essential first step before I had the bandwidth to really focus on how much my poor sleep, poor eating habits, lack of exercise, and stress were all undermining my health.

This year I’m focusing on my health (while also continuing therapy, albeit less frequently than before - just 1x/month). I started with a two week vacation away from work and parenting. The first week was a trip with my husband, while our kid stayed home with my in laws. The second week was a yoga retreat. Both weeks were at all inclusive style hotels with healthy and nutritious food and required no work from me. Someone else took care of all the details, which was glorious. By the end of my second week, I actually felt a) human and b) like myself, which I realized I hadn’t really felt since before having a kid. It was shocking to realize that I’d forgotten what it feels like to be me.

I’ve also been working with an Ayurvedic health counselor at the Vedic Center in Rockville since January. They help coach on a variety of lifestyle habits, and they also offer spa like treatments. Anyways, with their help, I’ve been much more consistent with getting enough sleep and eating much better, both of which completely deteriorated in the last four years of dealing with my daughter’s needs. I got an Apple Watch last year and learned that I was consistently only getting 6 hours of sleep and over time, that’s too little sleep for me and I was just run ragged. Always tired, always stressed, and so easily angered. I couldn’t manage to reset the cycle on my own, but the work I’ve been doing with the Vedic Center has been moving me in the right direction, slowly but surely. And their Abhyanga hot oil massage treatment - it is truly the most transformative experience. I’ve always been one to treat myself well - pre kid I had a massage every month, and while pregnant I had a massage every week for the last two months. And I have never felt as good as I have after their Abhyanga treatment as I have, literally ever in my life. I can’t tell you how much less stressed out I feel before and after treatment.

Anyways, now that I’m starting to actually work on these issues and prioritize myself and my health, you know what’s so much easier to deal with? Both parenting and work. It really is true that when you’re supported, you’re able to support others.

I should say, I’m able to do this stuff because I’m using my leave. Work got so bad that I was talking openly about quitting with pretty much everyone at work, including my immediate boss and her boss, and they’ve both encouraged me to take leave. They’re the reason why my one week yoga retreat became a two week trip. I’m taking a lot of sick and annual leave for my appointments at the Vedic center. I’ve accumulated so much leave from never going anywhere during the pandemic, and I do think there’s something to be said about the number of people who quit jobs because they’re burned out, but still have a lot of leave they weren’t taking. It’s okay to take leave because you’re tired. It’s okay to take leave and stay at home while your kid goes to school and your partner goes to work. It’s okay to take leave and just sleep or decompress or go for a walk. All totally valid ways to use your leave.

Also, it’s totally okay to quit your job too. Or go part time if that’s what you think you need to feel better. It’s totally okay to prioritize doing whatever you need to do to feel better because you matter too, and what you need is also important. And just as important as what your kid needs.

Pp - I am the pp above and I am crying and cheering for you because everything you said feels so true and so right. I am so happy that you are taking this time for yourself and I am taking a leaf out of your book bc I am so run ragged now and I was run ragged when I didn’t work for 5 months (not on purpose) and I can’t remember what it feels like to be me either.

I’m a poster from page 1 and same. Your story is inspiring. I woke up feeling terrible, my body hurts and it’s a reminder that I’m not taking care of myself. It’s all about work and the family and I got lost somewhere in there. Good luck to all.

[Anonymous]

OP here. Thank you everyone for sharing their experiences and a reminder to take care of myself.

[Anonymous]

I have an early elementary child with ASD and ADHD who is also in SACC before/after school. Instead of quitting, which I weighed heavily, I stopped the upward trajectory of my career. I'd be lying if I said as a type A person that it wasn't sometimes hard to accept but I try to acknowledge that it's the best compromise during a difficult period.

[Anonymous]

I would try outsourcing more first. Give it 6 months, then another 6 months if it is working. It is hard.

[Anonymous]

Following this thread with interest. Thanks for the honesty and intelligence. Thought some of you might benefit from reading this, about TV journalist and special-needs mom Judy Woodruff. She describes crying every day for two years during a particularly acute stretch of her son’s health struggles, and debating hard about quitting work. I found it helpful to hear a from mom a few decades in.

[/url]https://www.washingtonpost.com/lifestyle/2022/12/29/judy-woodruff-pbs-newshour/

[Anonymous]

OP, no advice, just solidarity. So far my compromise is to work in a job that I’m overqualified for but that gives me a ton of flexibility to do appointments. It’s also not that hard or stressful, which means that I have mental and emotional energy to dedicate to my family and kids’ needs. TBD whether this is sustainable, because I’m very driven and it’s hard to see friends and colleagues do super cool, interesting, challenging jobs when I’m sitting here on the mommy track.

[Anonymous]

OP, can you do 1:1 academic tutoring after school instead of the current after school program, at least on some days? Since you can afford it, it could help to not fall behind academically. Otherwise that leads to lower self esteem, affects social life and ultimately in some kids leads to school refusal when teen years come.

Do what it takes to lift your child up academically.

[Anonymous]

I left my job to stay at home for 10 years to focus on taking my kid to doctor’s appointments, therapy, countless early pickups from school. It was exhausting and draining. The issues never subsided - just shifted. I decided to stop waiting for a calm in the chaos to go back to work because it would actually never come. Now I am back to work - juggling everything, which takes a lot of effort and time, but honestly I am happier. I was finding I was starting to resent my kid and the future looked bleak. Now, I am back to work and I feel more at peace than before because my focal point is not just him and his needs. Perhaps I am just being selfish, but I wish I had never left the workforce. But that is just my experience - everyone has their own path. Call in help from the outside - tutors, housekeeping, etc. so you can be there for your kid and not be exhausted.

[Anonymous]

Anonymous wrote:Following this thread with interest. Thanks for the honesty and intelligence. Thought some of you might benefit from reading this, about TV journalist and special-needs mom Judy Woodruff. She describes crying every day for two years during a particularly acute stretch of her son’s health struggles, and debating hard about quitting work. I found it helpful to hear a from mom a few decades in.

[/url]https://www.washingtonpost.com/lifestyle/2022/12/29/judy-woodruff-pbs-newshour/

I never knew this about her.
I never realized when I became a mom that no matter what - you sign yourself up for some really freaking terrifying, awful, scary things. Hopefully some amazing ones too but holy cow