Special needs child and managing career

[Anonymous]

Looking for advice from professional women who have managed to raise kids with special needs while managing their careers. I have the professional background that allows me to WAH and make over 220 K (I know that I am lucky) but I am exhausted and feel that I am not present for my child. My child is in early elementary, ASD + ADHD, has no disruptive behavioral issues, is in before and after school SACC with no issues, but is falling behind in school. We recently started meds for ADHD, and I am hoping this will help. We are a dual-income family, and we will be OK if I quit working. However, I know that in the long run this may not be the right financial decision for our family. I need ideas of what I can do to help my child.

[Anonymous]

Honestly, it has worked out far, far better for me to have the money to pay for a tutor for my child (dyslexia & ADHD, so different than what you're facing) than it has for me to tutor him myself. He hated it when I tried to tutor him. Then we later had to pay for private school for dyslexia.

What's contributing to your exhaustion? Work hours? Work stress? Stress about your chilld? Time spent on chores/errands?

Playing with DS and making him laugh is a huge stress reliever for both of us.

Hope you find something that helps him and you soon.

[Anonymous]

What helped me the most was therapy . . . for me. There is just so much to untangle that having a space for me was invaluable.

[Anonymous]

My situation is similar and I too am concerned about being present for both of my boys. Are you able to outsource more and hire tutors? 220k can go a long way in terms of getting help...

[Anonymous]

In a similar situation. I make about $200k in a job I really like. Last year, I was so overwhelmed I decided to ask my boss to stop working so I could be with my kids after school. If he didn’t agree, I would quit.

My boss/employer was ok with it, and it has been amazing to be able to stop working at 3 pm and be with my kids. It’s not that they couldn’t handle aftercare, it is that now we can talk about the day, relax, I am availability to help with homework and can see when they are struggling to understand something, etc. Before it was a mad rush from pickup from aftercare to get dinner and de bedtime routine.

I am happier, my kids are happier, and I finally feel Ike I know what is going on at school. Worth the (largish) pay cut.

Cramming in the work into fewer hours has been a challenge—some stuff just doesn’t get done. That has been hard for me to adjust to — but I do stop working at 3 pm unless it’s a real emergency or a meeting I can’t schedule another time - maybe only happens one or two times per month.

[Anonymous]

Get tutors.

[Anonymous]

I think you should get an after-school sitter and a tutor. Your kid will spend more time at home relaxing, you will get to him, and then the sitter can take the kid to the tutor.

[Anonymous]

It is brutal. I made it work for 13 years because my salary paid for private school specialized for 2E dyslexic kids in 2 states. Unfortunately my younger 2E kiddo has the ADHD/ Anxiety profile which is harder in our experience to find a good private school. So we also spent a fortune on advocates, therapists, social skills groups, and tutors etc. to make public school work. It all fell apart with COVID. My health collapsed and then my company went out of business.

I don’t regret the time I spent working, as the resources got my kids to a better place, and we were able to save for college and retirement. But I do wish I had considered going part time. And I definitely regret not taking care of my own health. I should have been more concerned with hiring a trainer than a housekeeper. Therapy helped keep me sane, find someone who can meet with you virtually or a parent group so you don’t feel so alone.

[Anonymous]

Anonymous wrote:In a similar situation. I make about $200k in a job I really like. Last year, I was so overwhelmed I decided to ask my boss to stop working so I could be with my kids after school. If he didn’t agree, I would quit.

My boss/employer was ok with it, and it has been amazing to be able to stop working at 3 pm and be with my kids. It’s not that they couldn’t handle aftercare, it is that now we can talk about the day, relax, I am availability to help with homework and can see when they are struggling to understand something, etc. Before it was a mad rush from pickup from aftercare to get dinner and de bedtime routine.

I am happier, my kids are happier, and I finally feel Ike I know what is going on at school. Worth the (largish) pay cut.

Cramming in the work into fewer hours has been a challenge—some stuff just doesn’t get done. That has been hard for me to adjust to — but I do stop working at 3 pm unless it’s a real emergency or a meeting I can’t schedule another time - maybe only happens one or two times per month.

I did the same thing- switched to part time hours so I could pick up my kids at the end of the school day. I log back on most evenings and I wish I didn’t have to do that but it is very good for my kids. At least once a week I’m out early for an appointment so it can be a lot but I am happy I did not quit so far.

[Anonymous]

With your income, I'd throw money at stuff. Like others said, a tutor if needed. Maybe cleaning and meal stuff, so you can spend your non work time with dc and not worry about that other stuff.

I do work full time-for me, cutting back or flex hours or WAH is not an option. I do have guilt, but I am doing the best I can. My biggest issue is getting dc places-if I could hire help for that, I would.

[Anonymous]

I outsourced a ton of stuff. And it was well worth it. In the end, my child wasn’t going to have marked improvements and will need 24/7 attention. In our case, money will be more meaningful than time. That said, my kid had major regression and now has profound intellectual disability plus ASD. I could not have known this until about age 7 or 8.

The nice thing has been that I’ve moved into the C suite as my neurotypical kid turned 10. I can actually ease off a bit on hours working in order to spend major amounts of time with her. I actually think the time I have with her now is more valuable than the time I missed when she was 3-7 and I was working my way up the ladder.

But, I’m also a mom that is probably more “paternal” than “maternal” in some ways. I don’t long for time with babies, I don’t care about elf on the shelf or other Pinteresty things. Even if I had all the time in the world, I would not enjoy many traditionally homemaker type activities.

[Anonymous]

I'm in the same boat. The work/life balance is tough, especially with a special needs child. That said, I'm grateful to be working for a number of reasons: it gives me an intellectual outlet, I care deeply about my work and I feel happy doing it, and the income does help with things like tuition, services, tutoring, therapies, and support for my kid. I 100% agree that building self-care supports like therapy and a personal trainer to help keep yourself healthy and balanced is more than worth it. Those two things (as well as starting to meditate regularly) helped me be present for my kid more than leaving my job would have ever done.

That said--it is tough. I have also told some of my closer and trusted colleagues about my DC's condition, which has helped in terms of the work/life balance.

[Anonymous]

I would look into one of the private schools for 2e kids first. Maybe also hire a tutor/babysitter.

[Anonymous]

There are no good answers and you don’t know what next year will bring. I took a position with less responsibility and fewer hours as my kids got older, not because of special needs but because they needed more in the afternoons and evenings. Like driving to practices.

Then things got bad and worse with my kid with special needs. We still make enough to throw money at things - therapy, tutoring etc. but you often have to drive to those too.

My husband and I were just discussing if I should take a leave of absence or if one of us should try to retire early. We are so tired from all of it with both of us working.

[Anonymous]

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.