Managing Work-Life Balance When You Have a Child with Special Needs

By Chris Biscuiti

Having our baby boy was the biggest blessing of our lives. My wife and I were ready for this new chapter called parenthood … little did we know that our son would be tested so early and often.

He was 5 1/2 months old when the seizures started. He would lift his shoulders and drop his head, a motion that we were not familiar with. Once the neurologist confirmed that he had a rare condition called Infantile Spasms (IS affects 1 in 3,000 babies), we spent 7 days in the hospital with our son as he was treated with a powerful medication that was not without its side effects.

• The medication worked (sometimes it doesn’t)
• He had no permanent brain damage (sometimes it’s the root cause)
• We will never know why it happened, but we remain as blessed as we were when he was born

We have endured and he has conquered so much already. He is seizure free since leaving that hospital on his 6-month birthday. He has been medication free since he was 9 months old. Today, he is 21 months old, and 1 year medication free.

Sure, we have 14 early intervention therapies per week that we have to balance with our work schedules, but things could have been much worse. We have exited the acute management phase and it’s all about his development. We are blessed because he is a happy boy, and because we have received nothing but support from our friends, our families, and our colleagues.

Here is what I’ve learned along the way when it comes to managing work-life balance when you have a child with special needs. These are a few things I remind myself of every day as I get situated at my desk:

1. Better time management at home makes for a more efficient work day. Perhaps the most important lesson I’ve learned is that by taking advantage of every minute with family at home, I find myself to be more refreshed and ready to go whenever I’m at work.
2. I don’t take my ability to be productive for granted. I have always prided myself on working hard and being proactive. With that said, seeing my son fight for every milestone has made me realize just how lucky I am to be able to formulate ideas and see them through.
3. I have the power to organize my thoughts. Organization does not always come easy for some people. No matter how your brain processes information, it is important to find a system that works for you and allows your mind to sort things out. The more meticulous you can be, the more you can get done.
4. Tackling the challenging tasks at hand is never as painful as ignoring them. Whether it was sheer instinct or just how we both decided to react, my wife and I did not hesitate to address our son’s issues head-on. We asked for help, and we made it as easy as possible for people to help us. We cried. We coped. We had every emotion under the sun. The one thing we did not do is wait or remain idle. Instead, we researched. We refocused. We came up with a plan and said, “Okay, let’s do this.” Today at home, the mantra remains the same, and it’s a lesson I carry over with me to work.
5. Embracing small victories and praising team efforts makes us all more motivated. Celebrating big accomplishments is obviously a good thing to do. Usually, however, those huge wins are the culmination of a bunch of smaller victories.

For example, due to his developmental delays, my son cannot crawl … yet. But because of the hard work we have all put in as a family and a team of specialists, he is now comfortable in the crawling position.

When he does crawl, we will be overjoyed and overcome with emotion. In the meantime, there has been so much to celebrate along the way:

• The way he puts weight on his hands
• The way he now looks up at us or his toys
• The fact he no longer cries in the crawling position
• The way he rocks himself and keeps his balance

These are all “small” achievements that we all cherish, acknowledge, and appreciate, and we also encourage each other to keep going as we praise him as well. Applying that same mindset at work makes a huge difference because it creates an environment of positive reinforcement that is well-received and is bound to be reciprocated. I’ve learned more about myself in the past 2 years than in the previous 35 combined, and these lessons have really helped me become more alert, empathetic, and attuned to the needs of others than I ever have before.

And at the end of the day, I know these three things to be true:

1. We really our blessed.
2. My son is my hero.
3. Work/Life balance does take work (and understanding), but it is, at the end of the day, entirely possible.