Walking a mile in someone else’s shoes, gives us insight into our own, as well as others lives. This wisdom will effect how we respond or query when it comes to how another person decides to live his or her life. Hopefully, our experiences will also teach us to be respectful of others, even if we don’t always agree with or understand their choices. Everyone has the right to live their lives as they so choose, as long as they are not harming others. Life is hard enough for each one of us with the inevitable stressors and adversities that will come. For some, their share of hardships will well exceed those of other people, which is so unfair, and often unimaginable…
Everyone of us has a story: we come from backgrounds that still shape our personalities and perspectives today. Many of us have had to endure or are continuing to deal with major difficulties. We are mentally, emotionally, and physically exhausted. In order to endure the long term, particularly in the case of special needs parenting, we must choose those people, places, things that give us joy, acceptance, and hope, for to do so otherwise is not taking care of ourselves, and THAT doesn’t do anyone any good, especially our disabled son or daughter who count on us. They give us an important purpose, even if it comes at a very high price and all the more reason to live our best life.
I have 2 stories in my life: the “Before Brian” story, which was long and the current “Daily Brian” story, which will be for the rest of my life. Life was certainly different “ before Brian”. I worked in the airline industry for 4 years, then in the pharmaceutical/medical education industry for almost 10 years, went to graduate school, and finally became a special educator for almost 5 years, with an opportunity to live in Germany for 16 months in between. I was very blessed to have had different career opportunities and learned a lot from each one. There were freedoms, interesting parts, and mundane aspects of each profession. I met colleagues along the way who taught me so much and visa versa. I would not have changed a thing and am grateful for everything I learned in my jobs, I still apply my pharmaceutical and educational background today, as it pertains to Brian’s wellbeing. Little did I know then just how valuable my work experiences would be today…
Story #2 had a brief transition first of meeting my husband, buying a home, getting married, and having Brian all within 14 months. Talk about major life changes! Then open heart surgery for Brian at 3 months, a few more medical diagnoses by 2.5 years old, including autism, then moving to our current town for better special education services: all of it was like getting smacked in the head with a 2X4! I worked part time periodically after that both in medical education and early intervention, ironically enough, and battled colon cancer. Brian’s needs increased steadily over time, demanding more of my attention. My husband and I made a decision at that point that it would best for me to be home full time to take care of Brian and our home. It was a decision that made the most sense for our situation and still does today. There are pros and cons to both working outside or inside the home, but I know that I have done my best most days for Brian and can focus on what he needs because I am home. This personally gives me peace of mind and is worth the sacrifices I have made to help Brian live a healthy/happy life, at least most of the time . I consider such outcomes to be the most important thing that I will ever do with my remaining time on earth. Yes, it is very hard and often a struggle, but I wouldn’t change a thing.
Of course not everyone has the ability or desire to either work or not work outside of the home due to financial circumstances or personal preferences. There may be other children in the family besides the disabled sibling, or health issues, other preferences or priorities. Each family knows best what works for the them. I believe being a stay at home parent of a special needs son is just as important as parent who works outside of the home: Both positions have purpose, both necessitate multi-tasking, both jobs can be relentless, and both require endurance. I do not derive my self worth from working outside the home or not- having been on both sides of the fence, I would say both experiences have been equally important in shaping my opinions, experiences, and ideals, but that is separate from who I am as a person and how I view myself. I place much more value on my relationships than my work experiences, especially with family and close friends, for in the end, they will matter more than any job promotion.
Some people may assume that because you are a stay at home special needs parent you aren’t up to anything constructive, but nothing could be further from the truth. I periodically have people ask me what I do with my time. I would love to video tape what a day in our home looks like, so they can see! A disabled child requires many things: help with self-care/ activities of daily living, plus advocacy: medical appointments, phone calls, endless government or camp forms, shopping, constant communication with the posse of people involved in his/her life. There’s also planning your disabled son or daughter’s social life/ recreational activities and being there for every one of them. There are no weekends off. And don’t forget the house, for someone has to shop, cook, clean, and do the laundry. After telling one friend all of this a while back, she said she would much rather go to work and considered that to be easier than being home. I tend to agree with her assessment, especially on certain days for sure! It’s all a matter of perspective and our own personal experiences. There is no right or wrong, no matter what side you’re on, both are of equal value and are important.
What’s most important is what we do on our own side of the fence: how do we juggle all of our responsibilities, while simultaneously take care of ourselves? It’s really hard to do so, but over time we see that what we once perceived as a luxury, is actually an imperative: self care. As a former flight attendant, I was taught in training that adults have to put on their own oxygen masks first, before helping others. This is a fantastic analogy of the special needs parenting experience: if we really want to help our children and be around a long time for them, we must take care of ourselves. So, in my case, that could mean going to the gym, meeting a friend, reading a non-special Ed book or taking a nap when I do have an hour or two before Brian gets home from school, for then the second shift begins…I used to feel guilty about this, but as Brian nears 19, and as I get older, I can’t get enough of trying to make time for myself when possible. It’s the best gift that I can give both of us and has become a necessity that I can’t live without anymore.
Wishing us all many self care opportunities that will restore our physical, emotional and mental, well being, whether they are brief or extended, and without self guilt or disapproval/approval from others- we know our personal lives best, what works for us and what we need- we are worth it , so work it! 😊😊😘😘❤️❤️❤️❤️❤️