Developmental Delay – Coping with Uncertainty

Call it mother’s intuition but I’ve always known something was different with Matt. I couldn’t pinpoint it and honestly, to this day I still can’t. He is special. His laugh is infectious and his personality is magnetic. He is independent, social, empathetic, curious, stubborn and determined. He loves with all his heart and is a true charmer. Matt already has so much depth yet he is still just figuring it all out. Diagnosed early on with a global developmental delay, Matt is constantly working to develop skills that come so easily to other kids, including his twin brother. 

Children can develop delays in different areas including speech, motor skills, vision, social/emotional skills and cognitive skills. When a child is delayed in many or all of these areas they are said to have a global developmental delay. In some cases this may occur for known reasons such as Down syndrome, fetal alcohol syndrome, fragile X syndrome, severe medical problems due to prematurity, or in Matt’s case, there is no known reason for the delay. After an exhaustive search, including doctors from both CA and TN, there is still no definitive cause of his delay. There are no answers, just constant questions and concerns. 

For Matt (and us as parents) this is a marathon and not a sprint. It’s an emotional rollercoaster with many ups and downs. Like clockwork, just when my husband and I are concerned with his progress, he does something unexpected. He marches at the front of his own parade and he continues to let us know that. You can easily spend your life filled with anxiety wondering what’s next, or you can decide to live happily in the present. Below are tips that have helped me better manage the unknown of a child with a global developmental delay and create a more balanced, long-term approach to living with uncertainty.

ACKNOWLEDGE YOUR FEELINGS 

With anything that causes uncertainty in our lives it is too easy to focus on the unknown and feed into our fears. When we first realized that Matt was showing signs of a significant developmental delay, my mind was immediately flooded with fear. Would he talk, would he walk, would he catch up to other kids his age? I didn’t want to acknowledge these fears and hoped that my anxiety would simply go away. I’ve learned quickly that the longer you wait to confront your feelings the louder and more consuming they become. I started to find myself worrying about Matt all the time and it was exhausting.

Feelings are a natural part of life and it’s OK to worry about your child. What parent doesn’t worry? What I found helpful was to take a minute to acknowledge my feelings, face my fears, and put it to rest. You can say it out loud to yourself, talk to your partner, share with a friend or family member, but the important thing is to get it out and stop internalizing it. Do you have control over the outcome? No? Then take a minute to sit with that fear and move on. Your time is valuable. Acknowledge your thoughts but don’t dwell on things you can’t control.

FOCUS ON WHAT YOU CAN CONTROL 

My husband always says “Circle of Influence, Circle of Control” which is a variation of Stephen Covey’s “Circle of Concern, Circle of Control”. Both are meant to highlight that while we may have a lot of concerns in life, there are only so many things that we can actually control. I use this mantra in all areas of my life when I start to feel overwhelmed. It has been especially helpful with navigating my concerns for Matt.

When anxiety creeps in, I focus my attention on what I can control. I can be his advocate and get him the right medical intervention including weekly therapy sessions, appointments with specialists, and state assistance. I can make sure that we are encouraging Matt’s newfound skills at home to help continue his progress. These are things that I can control. When you take action, you might not have the immediate outcome you desire but you have immediate peace of mind knowing that you have done all you can do that day. 

ASK FOR SUPPORT 

It takes a village is honestly one of the truest statements when it comes to raising kids. Especially children that require additional attention. We have always been lucky to be surrounded by so many that care. From family members, friends, to incredible doctors, our village has been a huge support for us.

I used to be someone that wanted to do everything myself. I’m not sure what I was trying to prove but I wanted to be the perfect mom, capable of handling everything on my own. Matt has given me a new sense of what a perfect parent looks like. It’s not the person that does it all but the person that does what’s best for their children.

There were times when I couldn’t miss a meeting at work and my mom took Matt to an appointment. I’ve cried to friends so that I could then smile for my kids. I reached out to a friend who had experienced a developmental delay with her child to better understand my new world. She helped set expectations and was a calming voice when my thoughts were overwhelming. If you need support, ask for it. You’ll be surprised how quickly your village forms. 

MAKE TIME FOR YOURSELF 

As I mentioned above, this is a marathon, not a sprint. The constant worry, daily therapy appointments, and ongoing doctor visits, can be draining. It is important to take time for yourself. Parenting in general is a selfless job but I encourage everyone to find time for themselves. Whether it’s a workout, meditation, girls night, or all of the above, find time for you. 

For me, I need sleep to function well. I didn’t know how much sleep affected me until I had kids! On mornings when I wake up tired, my husband will take the kids so I can sleep a little longer. Those extra minutes fuel my day and make me appreciate my husband that much more. Find your balance of selfless and selfish. Without balance, you are sure to lose your footing. 

BE PRESENT 

Even when the future seems uncertain my boys are my constant. They bring me so much happiness and I’m forever grateful they are mine. If you are constantly focused on the unknown future, it’s hard to appreciate what you have right now. When I’m with my boys I try to be present and take in all the moments both big and small. At the end of the day, those moments (smiles, giggles, I love you’s) are like a highlight reel that keep me smiling long after the boys are asleep.

If you need help focusing your positive energy, The 5 Minute Journal: A Happier You In 5 Minutes is a great place to start. It begins your day with focus and optimism and ends the day with reflection and gratitude. When you fill your mind with positivity, it will be harder for uncertainty and anxiety to find a space. 

Sending love to all the parents of a child with a developmental delay. Hang in there! No matter how uncertain the future may seem, know that you can find happiness today and be hopeful for what’s next.  While the process may be slow, growth is happening, and your child will blossom in their own special way.