How to build a career & income as a single parent of special needs kids?
August 22, 2014 1:32 PM   Subscribe

I've driven my career into the ground as a parent of two special needs kids. Where do I go from here?

I have kids with multiple special needs. It can be hell. Their dad is involved but does not do any heavy lifting, is not capable skills/personality-wise of doing the advocacy, and I can't ask him to take more time off work because it would put his career at risk and we would all be in big trouble financially - so please don't push that. I've driven my business into the ground because I just do not have the bandwidth to manage clients on top of all this.

I used to earn a good income and I had the education and professional experience to be on a great trajectory. My peers are generally earning six figure incomes and those who pulled down the grades and career experience I had are in very comfortable positions. My career has gone from being very solid to being a hobby, although it's amazing I do what I do.

My support payments and so on are okay - I'm not asking for help from a legal/financial perspective. I am in therapy and I recognize there is grief/trauma to work through - so I'm not asking for help in processing or accepting this stuff. What I do need is some help in figuring out how in the heck I am going to have a career and an income, given the amount of crap I have to deal with. I do not know how to deal with the practical aspects of having a career AND raising kids with multiple special needs. My week involves anywhere from 10-20 hours of medical appointments and advocacy and let's just say that the mornings and evenings are far more work than for other families, although perhaps not as bad as for some.

To clarify, my kids are school aged and attend full time daycare after school, but we usually end up running to appointments during both the school day and after school. And my kids need a ton of support in the evening. Both absolutely need parental support during that time and introducing a nanny when they've been at school all day is not considered to be something that would help. I've looked at hiring people to come help, but it is expensive ($25/hr with minimum 4 hours) and that isn't what I need, as it was causing too many transitions and difficulties for my kids and making life too stressful. I need some way to figure out how to still have an income and a career. That is bothering me more than anything. I want to have my career identity and sense of accomplishment, not have to worry about retirement, be able to enjoy vacations and other perqs, buy a car, etc. I do not want to feel totally dependent on their father, especially when I did so much to make sure I could have a career and a family in the first place, and I think it would be healthier for everyone if I had a career. Turning into a SAHM is not something I want - especially when my kids are school aged and I would have thought I would be running a decent business or a corporate department.

I think the biggest barriers for me are that my days are totally chopped up, ferrying my kids to appointments is exhausting, challenges arising from parenting can make the day unpredictable, I frequently get called to school/daycare to deal with issue, my kids get sick way more than other kids, etc. I am left with a slim amount of time to do any work and I increasingly cannot keep client details, deadlines or anything in my head, so I have been turning work away.

If you have been through this, how did you get out of it? What are some practical things I can do, from the perspective of making sure that I can earn and income and have work that brings in a meaningful income? It has to be a business - I can't work at a job, given the above. I've tried in the past, before my kids had as many challenges as they do now. I know some people are going to jump in here to say I need therapy for grief about my career, so I will repeat that I am working on all that, but I really would like some practical stories about how other people were able to build a business/career, especially if they were a single parent of children with special needs. I am not interested in making minimum wage and an income that low would probably further wreck my self esteem and not really be worth the effort *for our household*. I need to feel like I still have a good career and I really don't want to be that woman who has kids going to college and ends up working in crappy entry-level or intermediate positions. I have a professional education and I am talented and I cannot stand the idea of doing nothing with my career.

(If you need career info, please PM me.)

Apologies if I sound whiney and like I'm putting up roadblocks. These are just the honest realities and I know what has worked and not worked. And I think there must be some practical things other people do.
posted by Chaussette and the Pussy Cats to Work & Money (19 answers total) 4 users marked this as a favorite
Well if you can't hire a nanny, who can you hire to take other things off your plate? Do you cook? Do you clean the house? Do you pay the family's bills? Mow the lawn? Those things can be outsourced. Make a list of everything you do each day, each week, each month, and see how many things you can get onto someone else's To Do list. That might make it so you can do the stuff you can't let go of -- the doctor appointments, the morning/evening routine, etc -- but still have time to run your business.
posted by BlahLaLa at 1:48 PM on August 22, 2014 [3 favorites]

It would help if you could at least specify the kind of industry you work in---just a general keyword to guide us a little :)

I have a cousin in your shoes, and she makes apparently decent money doing corporate writing. It's the kind of work that does have deadline, but they tend to be more generalized ones---e.g. you meet with the client, they give you the project, and it's due three weeks from now. So there IS an actual deadline. But if you start it today and something comes up today, it's no biggie. This does mean that when you do have a smooth day and there is time to spend on your work, you need to be disciplined enough to knuckle down and DO it, on the off chance that tomorrow goes to sh-- and you can't do it then.

As for keeping details in your 'head,' I don't know why you would want to worry about doing that when you can write stuff down :) Download a to-do app for your phone, and out in all the details I have been working from home this summer and found that super-helpful. If it doesn't go on my list, it gets forgotten. Even stuff like 'go to the bank' or 'book dentist appointment' go on the list. Have a 'today' list for fixed appointments and absolute must-get-dones, a 'this week' list for items with more flexible deadlines, and a 'soon' list for everything else. Don't micromanage beyond that. And be prepared to pull an all-nighter on the 'today' stuff once in awhile. You have said you don't want your kids to be stressed, and I respect that. But sometimes, somebody has to be stressed. And if it won't be them, it will have to be you. Can you give up an evening of relaxing, if stuff needs to get done? Can you give up a deserved hour or two of unwinding after a hard day, if there are clients you didn't get to? It isn't fair to ask you to give that up sometimes. But if you are serious about running a business, you may have to.

You have also said you do not want to outsource your kid's business. That is totally fair. But are there aspects of YOUR business you can outsource? Can you pay--not a nanny, but a book-keeper? Or a part-time admin? Or someone to come in once a week, do some cleaning and chores, that sort of thing? That might free up some of your energy to deal with the clients and the business a little more.

Can you recruit clients from within the pool of people you work with on your advocacy? My aunt ran a home tutoring business for years, and many of her clients were very understanding about her own childcare issues. You could not bring a kid with you to sit in the corner at your corporate office, but she could bring a quiet, occupied child with her to a tutoring job and people would understand. If your clients are in the same shoes as you, they might be more inclined to cut you some slack and not stress you out if something does come up.
posted by JoannaC at 1:51 PM on August 22, 2014

If you don't mind, knowing the specific diagnoses or even just functioning level of your children could be helpful. I work with special need children with severe needs (profound cognitive impairments, wheelchair users, medically fragile, etc) and I have a few thoughts but a lot depends on what your kids are actually like, whether they have behavior and/or aggression problems, and what self-care they are capable of.

But some general thoughts. Instead of thinking about what everyone else is capable of, think about how much time you do have. Your friends can devote 40+ hours to work a week so it's not appropriate for you to be on the same trajectory when you have a lot less hours, but also you have to work in blocks, not long all day. So make your time count, but realize your progress may be a bit slower. And definitely don't rely on your memory to do things - there are tons of reminder apps, and even good ol pen and paper works. You don't need to be perfect.

A lot of the families I work with, one person works a more typical job but the other spouse often works a bit more non-traditionally. That can mean working evenings, or weekends, or it can mean only working on certain days. A meaningful income may not be the same you'd earn working full-time, but it doesn't have to be minimum wage either.

Do you communicate with any other local families with special needs children? They can be a really good resource for this stuff because they have to make it work, and know about local resources.

I know you've rejected seeking help, but honestly a lot of the families I work with have providers who are able to lessen the burden to a great degree for them. You don't want a nanny, but someone with skills in working with special need individuals. There are agencies that do this kind of stuff, but I'm not sure how it works outside of my state. It's an adjustment at first, but if you can connect with the right person it adds stability, but you have to build up that relationship. I have multiple relatives who do this, and it really relieves the family even if it's just for a couple hours one day a week.
posted by Aranquis at 2:04 PM on August 22, 2014

First off, your situation sounds exhausting and you don't sound whiny. I don't know how parents of typical kids do it, let alone those with special needs.

That said, I'm wondering if your therapist has mentioned "radical acceptance" at all. I don't know all the nitty-gritty but the general idea is that it's a lot easier to move forward if you can accept your situation and it's limitations. It's helped me a lot in dealing with a chronic pain situation and anxiety.
posted by radioamy at 2:25 PM on August 22, 2014

Response by poster: Just to clarify, I have answered some of the above questions through PM. I can also say that I've had a small business with clients for many years - before having kids - and that it did very well, even when my kids were small and I had far less childcare than I do now. So I do get flex schedules and working in chunks. It's just those chunks are hard to come by and it's very difficult to focus after a very difficult evening of aggression and so on.
posted by Chaussette and the Pussy Cats at 2:26 PM on August 22, 2014

I personally have my own special needs right now and I am trying to build a business while caring for my own needs. My kid is just fine, so my situation is not directly analogous, but hopefully I can share some insight about careers and special needs.

I am working on letting go of my career identity. I took great pride in being an income earner and I totalled my own health in the process.

Right now I am participating in a weekly meditation circle to help me manage my day-to-day existence in this. It's scheduled in the middle of my child's school day. In the meantime I am trying to not worry about whether or not I will succeed in my business, and simply keep plodding and prospecting to the best of my ability. Honestly this is the most useful thing I have done to help me build my business.

I will assume you have the same things I have, which are marketable skills, a network, and a willingness to work. Simply work those every day and do not worry about the outcome. Learning not to worry is the core skill you need right now.

I also don't have a stable child care arrangement. I have the benefit of extended family in the area and a support network. Although in the past I thought I was the only person capable of arranging child care, when I told my kid's father (who is my husband, which makes the relationship easier) that it was not possible for me to do so any longer dad stepped up and made the arrangements. Once I stopped being the gatekeeper on everything that has to do with my child, life got easier. I had to learn to manage my own worry and reaction to the things that happened, and trust that the child care would show up. It showed up.

I am not going to worry too much about the future. I have no reason to believe that I won't earn and have a career identity again one day just because I don't have it today. I just work. I just do my best. This is what every business person does, and this is how businesses are built.

I know you asked for alternative advice, but honestly taking care of yourself is the most practical first step. In my experience the other pieces will fall into place. Since I infer from your post that you are not starving, your housing is stable, and you have appropriate medical care, I implore you to take the time to do this.

You don't have to be successful today, you don't have to have a grand plan today, and you'll find that a career identity simply falls out during the process of working, however it is you happen to do it.
posted by crazycanuck at 2:28 PM on August 22, 2014 [3 favorites]

On a personal level it seems you have very high standards for yourself and your career, but given the circumstances and the resources you have I'm not surprised your're finding it difficult to square that circle.

I'm no corporate high-flier, so I can't speak to that but I'd maybe try to think about and re-frame the part about your peers and the perceived humiliation of "doing nothing" with your career, into doing something for yourself and your family.

While it may seem hopeless at the moment with your background and education you're certainly better resourced than a lot of other people in similar situations.

My father spent a good chunk of my childhood seriously mentally ill, and spent his time building sailing boats in our back room, and so my mother, found herself in a position position in trying to raise a family, run a household while my father was playing Noah on a single hairdressers salary.

The only way she made it work is because she had to; She worked long hours, and made it work because she had to, she was ruthlessly efficient, up at five in the morning making dinner for the evening ,and worked from seven in the morning to eleven at night some nights, while also making sure we were clothed, fed, washed and did our homework, and my father contained.

I think the key here is adjusting your own expectations of yourself and the world, but also re-framing your rather narrow ideas about people like my mother who are compelled to look after their families as being no less people and achieving no less in life than those on the corporate track.
posted by Middlemarch at 2:41 PM on August 22, 2014 [5 favorites]

What can you outsource if not child care? Outsource that. Be it cleaning while the kids are at school, using virtual assistants or real ones for the basic work related jobs & job tracking leaving you free to do the income producing work. Outsource your memory to a good app or 2 or hell even a filofax or notepad. Outsource your shopping to online & delivery.

Would a mothers help be something you could look into instead of a Nanny. Pay some teenager whatever the going rate is to come over in the evenings and not so much watch the kids as help you care for them. Do the running around, load the dishwasher tidy up the bathroom, stuff like that so you are less tired when they are in bed. Heck even just a couple of evenings a week.

You don't have to do it all, you do what is most important to you and either outsource or discard the rest. Be kinder to yourself. I get such a sense of anger & loss in your post. You are not going to have the life you dreamed, you are going to have this life. You may need a little professional help coming to terms with that, but there is no reason it won't be as fulfilling and happy as the life you lost. Different is not lesser. Your income is not a reflection on you as a person.
posted by wwax at 2:55 PM on August 22, 2014 [1 favorite]

Response by poster: I'm not looking for help in processing what has happened. I am looking for practical information about how to manage and have a career that reflects my training/education/experience. This is not because I look down on others - my mom was a domestic worker. It is because I will go stark raving insane if I do not have an interesting and fulfilling career. I am interested in stories more like how the people behind Mabel's Labels built up a business while raising a child with special needs and things like that. I am interested in learning what practical things people do. The outsourcing suggestions are good. Apps and software are good. I have a counsellor and am not looking for more info about acceptance or emotions. I just really would like to look at how to make some of this a reality, as it has been a very long ten years with decreasing workforce involvement - it isn't like this has been a short time.
posted by Chaussette and the Pussy Cats at 3:27 PM on August 22, 2014

I do not have special needs children, but I am a single mother of two small toddlers and many of the questions you pose are ones I've had to answer for myself.

1) I can't work at night anymore. I can't. It's off the table. Reaffirming this knowledge and turning it into a "rule" has helped me deal better with the night time crazies.

2) Do you qualify for respite care from the state? See if you do and use that time for yourself.

3) I have this option but you may not - I don't schedule any dr. appts after noon if I can help it.

4) I put everything in Evernote because it syncs to whatever device I might be holding at any given time.

5) I answer emails at night when I'm not fit for any other work that involves concentration. Sometimes I answer emails in the bathroom.

These habits let me carve out a rather stable 15-20hrs per week I could rely on.
posted by annathea at 3:50 PM on August 22, 2014 [2 favorites]

The thing that keeps jumping out at me from your posts is the word 'hard.' There are many aspects of your situation which ARE hard. But I think (I say this as gently as possible) that you need to clarify for yourself the difference between 'hard' and 'impossible.' It is totally valid to say 'today was a hard day and I can't do any work this evening.' But the consequence of saying that EVERY day is that you will not have the career you say you want. So when you say it is 'hard' to regroup after a difficult evening with the kids acting out, I hear that and I understand that. But I also would like to gently suggest that if you truly do want that career, you have to sometimes go back and do that evening work anyway. Hard is not the same as impossible. When it is impossible, you simply can't. When it is hard, is still is technically do-able, even if that doing takes a supreme act of will.
posted by JoannaC at 4:07 PM on August 22, 2014

I had to drop my boys off so I want to continue my post. I really feel you. I have reread your post a number of times and here is everything that has worked for me (continued from previous) and even some of the stuff that has not.

6) Can you create a product from your skillset instead of being in a position where you have to manage clients?

7) Can you focus on a niche in your industry where your primary tasks can be done in bits and pieces throughout the week, cumulatively, instead of requiring sustained concentration?

If I'm the primary caregiver (meaning, my kids aren't at their dad's or with their sitter) I can eke about 15-40 minutes of work out in a given time period (no more than 15 without interruption tho). So I stack my task priorities with those time constraints in mind.

Is income more important to you, or using your education and skills meaningfully? I tried to switch careers after my sons came along so that I could meet certain income requirements, but I discovered pretty quickly that a lot of my identity is wrapped in my work and I had to use the skills and experience I'd fought so hard to acquire, so I stepped back and looked at my industry as a whole and found small ways of working in it in order to meet my income needs, even though I took a paycut and was stuck doing some of the most unfun, tedious parts of the job because I could do it quickly and easily and come back to it after multiple interruptions with little damage.

Lastly, do you have a dream project? The one thing that has keep my spark alive in the last few years is that I have a dream project. It won't make me millions of dollars, it won't make me famous, it doesn't do anything except keep me interested in what I do and give me great satisfaction when I get five minutes or an hour to work on it. I got through a lot of nights with my sleepless youngest son without losing my shit by putting a pad of paper and a pen next to me on the couch and scribbling ideas while nursing or rocking him. I have a giant whiteboard ($10 markerboard from Lowe's) in my office where I keep an outline of the dream project goal so that I can see it and get that little boost. When the kids are demanding and I'm having a hard time seeing past the next diaper I zone out a little bit working out technical details in my head. It's become my happy place and it has made it easier for me to transition back into full time employment now that I have a more reasonable childcare solution.

It is so easy to write a summary like this and I do hope some of it helps but it glosses over so many agonizing days and nights (not the kids' fault, I was in a bad relationship and the needs of two babies and the physical recovery from back-to-back pregnancies were overwhelming me until I got out of it) and it took so much trial and error to find anything that worked, but you have to take your victories where you can get them. So if the best you can do in a day is ten solid minutes of daydreaming about what your ideal work life looks like in your current situation, then that's a victory.
posted by annathea at 5:38 PM on August 22, 2014 [1 favorite]

If you have flexibility with appointments for your children, can you schedule them all on one day, or, conversely, block out one day at which you absolutely will not schedule appointments?

So when they ask about scheduling, you say "I need to do it on Tuesday or Wednesday" and then the rest of the days you have more predictable time. Alternatively, you could say "I can do any day but Monday" and then Monday is the day to get work in.

The other thing to do is that even if your kids don't do as well with a nanny or assistant, you can designate a "work day" and on that day, they sort of have to deal so you can do work. This is not ideal but it might be a better balance between your kids' needs and your needs than you currently have. Daycare calls? Nanny goes because it's Tuesday and you're "at work".

I hope this is helpful. You have so much on your plate and even trying to carve out time for anything else is ambitious and brave. Kudos.
posted by the young rope-rider at 5:39 PM on August 22, 2014 [2 favorites]

You say your core problem is that your day is too chopped up to focus on work. I take that to mean that in order to do your job successfully, you need multi-hour blocks of time where you can focus on work, uninterrupted.

So, your focus should be getting those blocks of time. This seems pretty solvable, honestly. Your core hours where you have potentially useful blocks for work are when the kids are in school. Hold those times sacred as much as you can. Schedule appointments after school, or if that's not possible try to get them all in back to back or all on the same day as much as you are able.

If you have chores or other non-kid things that would interrupt your blocks of time, either get somebody else to do them, either your husband or a maid or whatever, or do them all first thing in the morning or right before you get the kids from school so that the middle of your day is open.

You're still going to have unexpected interruptions, of course, since you often have to head down to the school or to daycare, but if you can minimize the expected interruptions like appointments you will probably find that the unexpected ones are a lot more manageable.
posted by zug at 5:46 PM on August 22, 2014

oops, should have previewed.
posted by zug at 5:48 PM on August 22, 2014

I know hiring evening child care doesn't work, but would hiring someone to take the kids to their appointments be possible? That would give you much bigger blocks of time to work with. I can imagine it being a decent gig for an at-home mom with kids in school; if they have special transportation needs you could have them use your vehicle.

Does their dad spend time with them? Can he give you one evening a week and one weekend day when he takes over? (Since your career is being put on hold for his, and when the kids are of age you will still be behind, I hope his financial contributions account for that.)

I'm sorry... I'm in a much less extreme but not entirely dissimilar position, and it is overwhelming.
posted by metasarah at 5:55 PM on August 22, 2014

I think you need to look at that 10-20 hours a week you spend on appointments and rework that. I'm not saying don't go to appointments, but every week? If there are therapy appointments, can the therapist come to school and do the sessions there (many agencies in my state do that now)? How much of the advocacy is really needed verses something you feel pressured to do? If you are constantly having to run interference with school officials for services or what have you, do they need to be in a different school? Different classroom? Is there someone else in the community that can take on some advocacy programming (not exactly sure what you meant by "advocacy") to free up your time? Can you declare some weeks as "no outside appointments week"?

My questions are to give you a different direction to think. Not knowing specific details it's hard for me to get specific. I think a BIG part of the puzzle is rearranging all the stuff you want to do into time chunks. By doing so you aren't asking your brain to change gears/focus every 10 minutes...that's hard on anyone. Think of it like Pomodoros but on a larger scale. Appointments for kids only on Tuesdays or Thursdays, scheduling work on days dad has the kids, etc. if you are feeling this chaotic with the schedule I am sure the kids are too and being a bit more predictable might help them as well (and help nighttime meltdowns).

Bless you for taking all of this on! I like your determination...I am not in your situation but always happy to be a sounding board if needed.
posted by MultiFaceted at 9:32 PM on August 22, 2014 [1 favorite]

I had friends with special needs siblings and definitely understand your question. I am sure you feel the strain each day of having two kids with special needs. The time to yourself is never enough and opportunities to commune/work away from that continued challenge which will always exist are a temptation that makes one feel envious and guilty.

If you are so in demand for your work, enough for your clients to continue to want to work with you, then you must be in the position to make demands for how they work with you. Can you take on staff or contract workers to complete projects for you once you have won the business? If you think your business is on an upward trajectory taking less profit from the business by investing in high quality help would be advantageous to giving yourself the chance to make business time real quality time as a leader.

Instead of investing in a nanny, look at preparing your children now for a modicum of independent living. These services are probably not yet available or available only to adults with lifelong special needs in your area or state. Yes, you will have to be an advocate for your children becoming more independent if you also desire it for yourself.

A hard road! I wish you and yours my best wishes.
posted by parmanparman at 3:54 AM on August 23, 2014

Response by poster: Thank you to everyone who responded. I've got some good ideas here - especially from those who messaged me - and lots to think about. I think I probably need some business development coaching to help me figure out what I can do with my existing business, because, as much as I would like to, I just can't focus enough to handle switching from client to client anymore. I've already been working in bits and pieces and the shock of switching from child crisis (which can be extreme) to crisis is probably the most challenging piece. I just honestly do not have the mental bandwidth to manage multiple clients anymore and a lot of the business model in my industry - which used to allow me to work on bigger projects - has changed. So I probably need a new game plan, along with many of the suggestions above. Thanks.
posted by Chaussette and the Pussy Cats at 7:31 PM on August 25, 2014 [1 favorite]

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