Singing In The Rain: Parenting A Special Needs Child Through The Unexpected

Allie Meister   -  

A conversation with one of our church families who is parenting three children through the early phases, two of which are special needs…

Tell us a bit about your family – what phases are you currently experiencing?

Our oldest son, Nolan, is almost seven, our middle daughter, Maylene, is five, and our youngest son, Chase, is almost three. We are a homeschooling family, and in August Nolan will be in Second grade, Maylene Kindergarten, and Chase will start Special Education Pre-school. Three kids is no joke!

How have your child’s special needs shaped how you parent through the phases?

Nolan’s Diabetes has affected how we parent as well as how we function daily. The stresses of managing high and low blood sugars along the emotional instability each bring, can impact how we discipline and what we commit to during the day. Chase’s unpredictable seizures, because of his Intractable Epilepsy and his Spastic-Quadriplegic Cerebral Palsy make it hard to maintain commitments whether socially or therapeutically. We have had to slow down and step back from activities, relationships and work commitments. Every day looks different, and parenting through the unexpected has forced us to be alright with saying “no” and allowing space for the emotional weight we all carry. 

How do you balance your special needs child’s needs with your other children’s needs?

It is very challenging because there is a certain amount of attention that needs to be given to both boys. We try to make sure to Maylene gets special time and solo-experiences with each of us. Maylene has also had an increased awareness to how much attention the boys take from her, and she is communicating with us more when she feels like she needs to be loved on. Maylene has also developed a beautiful relationship with Chase and loves to take care of him. She doesn’t see his disabilities as a burden. With Nolan, there is frustration with what he can and can’t eat and she sometimes struggles when he has candy for a low and also wanting one too. She also will sometimes have to abstain from eating something in the moment if Nolan’s blood sugar is high and we are having him wait. It’s difficult to balance the feelings of exclusion between all 3 of our children. Even Chase is sometimes left out of activities because the environment is too much for him. There are many times we feel like a separated family because of the unique needs of our children.

What advice would you give to fellow parents of special needs children who need encouragement?

Allow people to help you. Don’t try to control everything and take it day by day. These two points are extremely hard on most days to keep in mind. Living in the moment is hard because it’s easy to feel like nothing will be different tomorrow or the next day or even a few months from now. But truthfully, having people around you who love you and encourage you, who are willing to sit in the unpredictability without the need to fix, or clean up the emotional mess, are extremely valuable. Find safe people who will love you regardless of your ability to follow through on commitments, who will encourage you to have hope and faith while acknowledging that what you’re going through IS hard and scary. 

How has your faith influenced your parenting, particularly as it relates to parenting a special needs child?

It has helped us feel like it’s not all on us. Like we aren’t in this alone. We have seen God’s provision and love constantly. I, Ally, struggle with wanting control and a clear plan. My faith has grown in that I see how God weaves things so beautifully together even when I see no way out. Drew has been encouraged by seeing how our child’s needs have in fact made them more of a vehicle for God’s love to flow through. These children belong to God, just like we are his as well, and we see his intervention daily. I don’t think our intimacy with him could be so deep had our children not had special needs. We acknowledge our powerlessness and our dependency on him more than ever and he meets us with love, encouragement, and peace whether he gives us the answers we are seeking or not.