How?

Candice from the I'm Adopting a Child with Usher's blog asked me some questions the other day, and I promised her I would blog my answer. Candice asked:

I have a question for you that I have found difficult lately. I know that you are a single working mom, how do you do it? Since we have had Rebecca, I can barely get in a 30 hour work week & I know that my coworkers are getting sick of me taking off all the time.

How do you work and have special need kids? Is your job understanding? What were your hardships, if any, with this?

I especially liked the part of the question “What were your hardships, if any…”. Believe me, the hardships are many and ongoing. I don’t think there has ever been a time when being a single working mom, especially with kids that have severe disabilities, has been easy. But, I have found some techniques along the way that have helped me remain sane. I’m happy to share these and hope maybe someone else’s journey through motherhood might be made a little easier as a result.

First, just a little background info. Most of you know I have 4 kids, three who have disabilities, and those three are adopted. My oldest son is 17 years old and is my birth son. The other children are 17, 15, and soon to be 13. I have worked for a state government agency for the past 22 years in the computer field, and with a little luck and an upswing in the economy, I will be able to retire from that job within the next 10 years.

When I adopted my first child, Ashley, I took her from her foster mom’s home straight to a visit to the neurologist. One of the first things he said to me was ”You must have quite an obsessive/compulsive personality.” I chuckled, but at the time didn’t really understand why he said that. Now I do. Those obsessive/compulsive tendencies have been a real source of strength for me along my parenting journey.

OK, here’s what has worked for me:

• Organization. I resolved early on to keep all important paperwork related to my children neatly filed away and easily accessible. It took some time in the beginning to work out the best filing system, but now having it in place takes almost no time at all to keep paperwork organized. I set up a filing cabinet per kid. There are places for adoption paperwork, medical history, reams of school documentation, and then a whole drawer for memory items. I have major categories within each of those areas, for example, IEPs, assessments, etc. or vision testing, audiological reports, etc. So, when I need a piece of documentation, I know exactly where to look – and that is quite a time saver.

• More organization. I find that even the little things like going to the grocery store each week can be a challenge. I certainly don’t want to take all the kids with me. If I did, we’d probably be eating nothing but Cheetos and chocolate chip cookies. But, paying for a babysitter so I can go grocery shopping just increases the grocery bill in a way. So my challenge is to get what I need from the store and get it quickly. If I can do that, I can do my grocery shopping at night after the kids are in bed (leaving my oldest in charge), or even on my lunch hour during the work week. To accomplish this, I prepare a menu of dinners for each week. I list the main course as well as the sides. I make that menu based on what is on sale at my grocery store each week. I check their flyer online, make my menu, and from that, make my shopping list. I make sure the shopping list is organized (there’s that word again) the same way the store is laid out. That means I make one quick pass down each aisle, pick up what I need, and get out and back home.

• And even more organization. One area of family life which can cause a lot of problems and could seriously affect meeting schedules is getting ready for school in the morning. I don’t have time 10 minutes before the bus arrives to be searching for shoes, socks, last night’s homework, etc. So, each school night, each child must pick out what clothes they want to wear the next day, put those, along with their socks, shoes and a jacket if needed on the far end of their closet, ready to be snatched up in the morning and thrown on. Also, backpacks must be packed and lined up at the door. Lunches need to be made and stored on the refrigerator shelf, and each lunch sack is a different color so no one gets the wrong lunch. Any papers which might need signing, or money that is needed for a school outing must be requested the night before. It only takes missing one field trip for a child to learn this schedule.

• Chores. Each of my children, no matter their disability, has chores to complete. It’s just a fact of our family life that everyone needs to pitch in to make things run more smoothly. The kids have learned that if things run smoothly, mom is happier and there is more time for fun. In the beginning, I provided chore charts so no one would forget what their assigned chores were. It didn’t take long for those charts to disappear as each child’s level of responsibility grew. Corey is responsible for taking trash and recycling to the curb weekly, filling the pet food dishes, and cleaning one of the bathrooms. Chip is in charge of yard work, heavy home maintenance (things like cleaning gutters and touch up painting), moving things to and from the attic and shed, and washing the car. Jessica and Ashley have to straighten up the family room each night before bed and help with meal prep and cleanup. Each child is responsible from the age of 12 for doing their own laundry. I assign days and times for each one to complete their laundry so they are not all vying for the appliances at the same time.

• Medical "things". One of the hardest things for me as a single mom is getting each child to their medical appointments, and I’m talking a lot of appointments given the severity of their disabilities. Over the years, I have gotten a little better at this. I found a pediatrician’s office that has hours into the early evening and on the weekends. That means less time off from work. For other doctors, I try to schedule their appointments as late in the day as possible, again meaning less time off from work. For visits to places like the eye doctor or dentist, where each child has to go, I insist on back-to-back appointments all in the same day. That is much better than taking time on four different days. I have tried to schedule the therapy appointments for both girls at the same time so that one could be having physical therapy at the same time the other was having occupational therapy. All this takes some advance planning and guarding my master calendar like it is gold, but for me it has been well worth the effort.

• Extracurricular activities. Since the kids all want to do activities other than school work and chores around the house, I have also had to figure out schedules for that. I do have a rule that each child cannot be involved in more than one extracurricular activity at a time, and it really helps if two or more can be involved in the same activity. For example, Ashley likes swimming lessons at our YMCA. While we are there, the boys can play basketball or pool, and Jessica likes taking part in teen craft activities.

• Schedules. I have taught all my children from an early age how important schedules can be (there’s that OCD part of me again). They get up at the same time each day, eat meals at the same time, get shower time in the same order and at the same time each day, and go to bed at the same time each day. I believe that for children with special needs, such a structure and routine to their days helps cut down on anxiety and meltdowns. And, the most important part of all this is that I make sure I work some ‘me’ time into that schedule also. The kids go to bed pretty early, at least on school nights, and I have an hour or two to myself to read, watch TV, chat on the phone, etc. It really helps me recharge.

• Medical emergencies. No matter how good a schedule we have, a medical emergency can throw a monkey wrench into everything. And, we have our share of medical emergencies. But, I even have a few techniques that help there also. For example, I keep envelopes on the back of the door which contains each child’s pertinent medical information and history. The document lists things like birthdate, address and phone numbers, insurance information, diagnoses, medicines and quantities, and every doctor’s and hospital’s address, phone number and fax number. Should an emergency occur and a visit to the hospital is needed, an envelope can just be grabbed off the back of the door. With multiple kids, keeping all the details in my mind wasn’t working, and I didn’t have time to go to the filing cabinet to retrieve information.

And then finally, there are two really big things that help me and my family make it through the week, and help me keep my job even though I have to take a lot of time off. First, I have help. After years of going this journey alone, I was finally able to lobby for and get Medicaid (the insurance my adopted children have) to pay for an aide for Ashley and additional help for Jessica. This help makes a huge difference. I have written many times about Amy, Ashley’s aide, and about what a wonderful and valuable part of our life she is. For any family who has children on Medicaid, I urge you to pursue such services. Don’t get discouraged if you are turned down the first time. Keep fighting, and learn all you can about your state’s available services.

The other thing that makes a difference for me is my job. Having been employed at the same place for so long, I do get a lot of vacation, sick, and family sick time. I still have to budget that very well to make it last through a year, but so far I have not had to go off payroll. And, being in a computer job, I am able to work from home sometime. I am very, very blessed to have this job and for the fact that my supervisors are flexible and understanding.

I think those are the high points. Boy, Candice, when you asked the question, I bet you didn’t realize I would get so wordy. Talk about efficiency, you have now just spent an inordinate amount of time reading all this. At least I hope it was worth your time!