A Glance Into My Life as a Special Needs Parent

Recently, I was interviewed by a college student that was writing an article for her magazine writing class. The topic was, “What is it like to be a parent of a special needs child?” My initial answer was, “It’s really hard.”

Knowing that was a terribly generic answer, I knew I needed to communicate something with a bit more substance. What surprised me most about this question was that it was so hard to answer. It shouldn’t be, but it is. It is hard to describe to people what life is like having not one, but three children with special needs.

My Unconventional Family

So, yes, it is really hard sometimes, however, parenting in general is terribly difficult. I don’t know any parent who would tell you any differently. I have five children (plus a husband and ex-husband, so one might say I have seven children), and parenting is all-consuming.

My oldest, age 20, has Type 1 diabetes. He was diagnosed at age 12, and it was devastating. My middle son, age 16, had significant developmental delays with a variety of sensory issues, finally diagnosed with attention deficit hyperactivity disorder (ADHD) at age seven. My youngest son, age six, has Down syndrome. I also have two daughters, ages 17 and eight, who thus far seem fine, but I anticipate the potential need for therapy as a result of growing up in a slightly chaotic and unconventional household.

Life Amongst the Chaos

Being a parent of a child with special needs is a gift, just like any other child is to any other parent. My family’s lives in particular are different though—not necessarily harder, but different. There are many more doctor and therapy appointments, Individual Education Program (IEP) meetings, teacher meetings, and countless sleepless nights.

“Being a parent of a child with special needs is a gift, just like any other child is to any other parent.”

Some nights we needed to wake up several times to make sure our newly diagnosed T1D son’s blood sugar was where it needed to be while we were all learning how much insulin he needed. Other nights we were up because our son with Down syndrome had respiratory issues and trouble sleeping. I imagine that parents of special-needs children worry about different things than other parents.

Not a day goes by that I don’t worry about the health of my oldest, hoping he is managing his diabetes while he is away at college. I worry about his future and how hard it will be for him. I can’t imagine what it must be like to be insulin dependent and hope that one day they find a cure.

And I worry about my son with ADHD and hope his medicine is helping him and not giving him side effects of depression and loss of appetite like they have in the past. I worry about if he is staying on top of his school work because I know how difficult it is for him. My youngest is still little, but I worry about his future. Will he live independently? Will people be kind to him? Will he have a job he enjoys? Will he have friends

Appreciating My Life’s Perspective

My family dynamic has given me a perspective that most others do not have. After the initial shock wore off, it just became normal. It became our life. I stopped aiming for perfection a long time ago. Now I am content with basic survival. I wake up each day knowing that the chances of it going as planned are slim. Most days we have a variety of crises, and we try to deal with them with laughter instead of tears. It doesn’t always happen that way, but we try. I am grateful for quiet moments, knowing they are few, and grateful for the days when my children are healthy and happy.

So, “What’s it like to be a parent of a child with special needs,” you ask? Well it is the only life I know. It is crazy, difficult, fulfilling, exhausting, never-ending, happy, and sad, but at the end of the day, it is incredibly amazing.

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