During one of Brian’s recent medical appointments, I was chatting with one of the nurses while we were waiting to see the doctor. She mentioned in passing how much health care has changed, as well as her role,  and eventually commented  how lucky I was that I didn’t have to work outside of the home anymore. “Actually, I quipped, “I do work both inside and outside of my home and work just as hard as before, the only difference now is that I don’t get paid for it”.  This lovely lady was clearly puzzled by my response. Let me explain…

I had worked as a full time professional for almost 20 years before Brian’s birth in various fields and capacities , including: flight attendant, pharmaceutical sales rep, medical education project manager, a special educator in the public school setting, (and more recently  a special needs teacher in our state’s Early Intervention system).Variety has always been the spice of my life and I enjoyed the rigors of these positions. The hours on the job for each were long, often intense, sometimes frustrating,( just like any job), but generally satisfying. I also earned my Masters degree in the evening while working full time.  I’m glad that I had the opportunity to try different careers and to go to graduate school during this phase of my life . But being Executive Director of Brian McDonnell, Inc. has been the most challenging, sometimes extremely frustrating, yet very rewarding, as far as “jobs”go.

I  still marvel how my world has gone from previously traveling around  the globe, to presently traveling around town most days. Life can certainly be unpredictable, filled with its twists and turns, and often with lessons to learn along the way. I have learned so much from my  many mistakes and triumphs throughout this journey, especially the current one that’s exclusively with Brian.

Sometimes, however, I do miss the freedom of the old days and will be struck by wanderlust to explore beyond the confines of local roads. I will coincidentally have an opportunity this year to travel, first with friends, then a separate trip to Disney World with my husband and Brian.  These are great things to look forward to and all of us need  a break from time to time for our mental sanity and for physical rest. But until then, there is a daily routine that must followed for both Brian’s benefit and my own. In the special needs world, I know that I am in good company in this regard.

I have calculated that I have 14 hour “work days” from the moment I get up, until I sit  down in the evening after Brian goes to bed.  First shift is during the day starting in the morning, until Brian comes home from school. During this time, I help Brian get ready, make breakfast, pack lunches do household chores, shopping, and any communication, advocacy,  research, as it relates to Brian’s well being. Communication, whether it be written or conversational, is time- consuming. In between, I try to get a quick workout in and help my Mom with her errands/medical appointments a day or two per week. It’s amazing how quickly the 6 hours elapse while Brian is at school! Before I know it, the bus aide calls to say they have arrived back at our house.

Second shift begins after school when Brian is home, which is pretty much helping him until bedtime with all aspects of his routines. When the home therapist come after school for a few hours, I am often doing volunteer work for Brian’s school, catching up on more correspondence with his school, social, or medical contacts, filling out countless forms for camps, etc. Then comes making dinner, clean-up, stories, Brian’s bedtime routine, then done- whew! I am tired and usually ready for sleep myself! 

Every family has unique circumstances that warrant an arrangement that works best for them. In our situation, my husband was always the primary breadwinner- had the roles been reversed, he would have been Brian’s primary caretaker and Domestic Engineer, while I worked outside of the home. Jim works hard and long hours so  that I can be home for Brian. We usually don’t see him until close to Brian’s bedtime. Some work days are later than that, plus he travels frequently overnight  for his job- this is the down side with a lot of corporations, lots of hours away from the  family. However, the up side is that I am on call for Brian 24/7- whether it’s school vacations, snow days, (this winter was particularly brutal!) or for illness. Brian has a lot of all of the above, so Jim can have peace of mind that I am there to mange things like this as they occur, no matter where he is.

It would be difficult to find a caretaker who could manage all of Brian’s particular  needs especially during those critical times of the day: before the school bus in the morning and after school. This is a struggle for many single and 2  parent income families- parents have to be out the door for work first thing in the morning and they need care for their special needs child then, as well as  after school.

Or what happens when your child suddenly gets sick and you have an important business meeting? Don’t forget school breaks and summer vacation. Not everyone is equipped to handle our kids unique needs. Good, reliable people are hard to find. Some families I know have extended family who can help. Others rely on trustworthy friends or neighbors. 

Employers are not always understanding of a special needs situation at home either. Sometimes people lose their jobs because they used all of their allotted vacation days to take care of their sick child. Some Moms would love to stay home, but can’t afford to. Others want to work,  but it’s so hard to find a job with the hours that mirror our kids schedules and that would allow for very flexible hours that we ( and they) need. I suppose a part-time job with  these specifications would be ideal with plenty of personal days to spare. There are sometimes no easy solutions.

As you can see, all Moms are working, whether in the office, or on the home front, with hired help, or the Moms are the help. Both scenarios have pros and cons to them,  both also require a lot of understanding, negotiation, and support from employers, spouses, caretakers, and extended family. Moms are the leader of the band! So much is expected from us because we  often make it look so easy and get so much done.

Raising a child with significant disabilities is a job that requires me to be at home for my son because he needs me to be there for him. There is a lot to manage in Brian’s life and I see that it will only become more complex and time-consuming as he gets older. My workplace just happens to be my homeplace, with long hours, and constant demands, but…I wouldn’t want it any other way. 😊

Thanks for reading! Until we meet again, many blessings on you and yours!😘😘