Work, Life, and Presence with a Special Needs Child
“Work, Life, Presence” a saying that will always be close to my heart and a reminder to myself every day. I was sitting at the Exertis Almo National Sales Meeting, and we had this amazing speaker, Kevin Carroll. He talked about his life, struggles growing up, and how far he had come into his career. “Work, Life, Balance” had a new meaning and it is now “Work, Life, PRESENCE.” It is not about balancing life, it is about being present, especially when you have a child with special needs.
I am a mother of a child with a rare genetic disorder, called Syngap1. He is one of 1,400 patients in the whole world! In his 6 years of life, we have had so much thrown at us: Intellectual disability, epilepsy, autism, language delays, sleep problems, motor delays, hypotonia, sensory processing deficits, emotional and behavioral challenges. Oofta, that’s a lot and mouth full! How would we ever be able to help our child ever overcome so many obstacles, maintain a “normal” lifestyle and how would we continue our careers as both working parents?
Working and maintaining a career with a special needs child brings many incredible challenges. But we are not alone, many families struggle with the same obstacles we do every day. I took myself down a deep hole when we first received his “official” diagnosis at 3 years of age. I didn’t know how I was going to manage this “new” lifestyle, but then I decided to come up with strategies to manage our time, energy and emotions. Below are some helpful strategies to help you with the navigating the challenging, but also REWARDING role as a parent with special needs:
1. Creating a Flexible Schedule
- Flexibility: If work allows, try and find a way to work around your child’s needs. You may have to take breaks throughout the day for medical appointments or therapy. Flexibility in your work schedule can help you accomplish this.
- Hours: Know your limits and avoid overscheduling. Always communicate with your employer/supervisor/customers about your availability. Don’t be afraid to adjust when needed.
- Prioritizing: Make a list of your work and home responsibilities and prioritize what is most important. This will help you focus on what truly matters and help you manage your time more effectively.
2. Communication at work
- Transparency: always maintain open communication with your employer about your family situation so they can understand your needs and limitations. Let them know you are committed to your work, but there may be a time when family responsibilities will take priority.
- Arrangements: whether you work from home, adjust hours, or take time off for medical appointments, exploring flexible work options will help you become more present with your caregiving duties and help you manage your work.
3. Support
- Building a Network: Having a network of caregivers does not always just mean family, it’s about your friends, neighbors, colleagues, etc. Don’t ever hesitate to ask for help when it comes to your child’s needs.
- Connection: Share your experiences with others. You will find it extremely comforting being open – for many are going through similar situations or know someone that is. Consider joining support groups so that you can exchange advice with others and provide emotional support. You are never alone.
- Professional Help: Don’t ever hesitate to reach out for help when you’re managing your child’s care. Ask for assistance from their therapists, caregivers, special education teachers, paraprofessionals, etc. It can be worth investing in support services to help you manage all your responsibilities.
4. Technology
- Tools: Digital tools such as calendars, task management apps, etc. will help you stay organized. This may include scheduling doctors’ appointments, therapy, and important work meetings. Keep them all in one place so you can stay on track. Also, having a good web cam will go a long way and avoids many headaches when jumping on calls.
- Virtual: When possible, utilize telehealth services for doctor’s visits, therapy, or consultations. This will help reduce stress and amount of time traveling to help you stay on track.
5. Wins/Strengths!!
- Celebrate: Focus on small successes whether it’s at work or at home. Celebrating a new skill they have developed or a peaceful moment you shared. The littlest things can sometimes be the most rewarding!
- Accomplishments: Acknowledge the efforts that it takes to be present in both worlds. It sometimes may feel like you’re constantly juggling, just know you are doing an incredible job by meeting your family’s needs and working.
- Abilities: Focus on your child’s strengths and achievements. This will be a powerful reminder of how resilient your child is and how much you accomplish together.
- Engagement: Bond in ways with your child that cater to their abilities and can be rewarding for both of you.
6. Advocate
- Know Your Rights: When you’re navigating special education or healthcare, make sure you stay informed about your rights as a parent. Understanding these rights will help reduce stress by making accommodations at school and navigating healthcare services.
- Workplace Accommodations: If your child requires you to need flexibility in your work schedule (example: medical appointments during workday), investigate your companies’ policies on workplace accommodations.
It takes resilience, adaptability, and a strong support system to be able to manage work while caring for a child with special needs. Remember you don’t always have to do it alone or perfectly. Ask for help and rely on your support system when you need it. You are their parent for a reason, and you will do everything in your power to provide them with the best life they can have.
Remember, it is “Work, Life, PRESENCE.”
If you enjoyed Amy’s blog, check out Rob Voorhees’ blog “Coach’s Corner: Overcome the Fear of Asking for Help“.
About the Author
Amy Krezowski
BDM – Brand Specialist
Supported Manufacturers: Peerless-AV and Planar
As I write this article, my truck is in the shop having new tires put on. Buying tires is one of my least favorite purchases of all time!!! Yet every few years I go through the same process. Gather my tire size information, check some tire websites, identify my needs in terms of performance (I live in Buffalo, NY, so a tire that performs well in the snow is a must!!!), establish my budget, read some reviews, select my top picks, shop prices, book the appointment.
Balancing these tradeoffs requires careful planning and consideration of the project’s specific needs and constraints. Conducting a feasibility study and involving all stakeholders in the planning process can help identify the best approach 
Of course, this naïve and incorrect view was the result of being on only one side of the fence. In the following years, I have been lucky enough to serve in several different roles throughout the industry, from design engineer at a major university, to project engineer, to consultant. Each of these roles has presented different sets of challenges, but more importantly, they have allowed me to see the industry from both sides of the fence, and how each of these roles complement each other to produce satisfactory results for clients and end users.
Why then do we need to have design drawings at all? Why can’t the Project Engineer simply take the end user’s goals and design the system to construction level all by themselves without the need for a Design Engineer?
AV integrators, by their nature, must have relationships with the manufacturers of products that they sell and install. To ensure competitive pricing, on-time delivery, and pre- and post-sale support, integrators must cultivate and maintain these manufacturer relationships. Through no fault of their own, this means that integrators will tend to want to sell products provided by manufacturers with which they have good relationships.
Building Strong Relationships
Enhancing Customer Service
As we head into the next 25% of 2024, one of my goals is to simply pay it forward. As I continue to learn from the “Brian”s and “Rob”s and “Tom”s and “John”s of the industry it becomes essential to continue the evolution and pass those learnings off to others even if it’s a quick note about “what not to do” so others don’t follow my same mistakes! Just as important as the mentorship is, there needs to be a willing “mentee”. Someone who doesn’t hide from those teachable moments I referenced and who shares the same eagerness for self-improvement. Much like how we might’ve asked inquisitive questions as children, I’m sure I asked John and Tom my fair share of “Why’s?” along the way. It was their Understanding and Compassion that made it easy.
