An Unexpected Journey

Over 15% of children in the United States live with special needs. These amazing children are in our schools, families, neighborhoods, and churches. We can grow in our understanding about their unique needs and learn how to love them well. 
One of our very own ministry wives, Susie Melnick, has a wonderful daughter with special needs. Susie shares with us this week about how her and husband, Mike, have journeyed with their daughter and how the church can better serve those in similar situations. Thank you, Susie, for sharing with us. 

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An Unexpected Journey ~ Raising a church and child with special needs.
Written by Susie Melnick

Brooklyn was 9 months old when we got the long-awaited call from the geneticist. I remember the day so clearly, because it was also my oldest daughter’s very first day of kindergarten. Life is like that, isn’t it? Layered with joy, wonder, new experiences, disappointment, and loss – all in one breath. On that day as we celebrated with our 5-year-old and her new accomplishments, we also mourned as we discovered our third and youngest little girl would be forever impacted by a disease that, up until that moment, we had never heard of.

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​Brooklyn has Phelan-McDermid Syndrome. This genetic disease is rare, has no cure, and no real treatment. It causes intellectual disability, the absence of functional language, seizures, sleep disorders, and many other challenges. That’s the black and white of it. But what you don’t read in this description, is anything about who Brooklyn is as a person, as a soul, as a creation of our incredibly loving God.
There is no doubt raising this amazing little girl has been a challenge and a blessing, as is raising ALL children – regardless of their abilities or disabilities.

HOW DO YOU COPE IN MINISTRY WHILE RAISING A CHILD WITH SPECIAL NEEDS?
We don’t claim to be experts, but here are a few things my husband and I have learned over the past ten years.

• SEE THE BEST IN THOSE WHO LOVE YOU

When Brooklyn was first diagnosed, it was a difficult season for both my husband and me. We questioned God, we grieved, and we did our best to navigate this new world of doctors, therapists, and testing. Looking back, I realize we weren’t the only ones having to navigate the unknown. Our church family didn’t know what to do or what to say to comfort us. They did their best, but we were often met with well-intentioned comments or prayers that were hurtful. We had to learn to see the best in others, and to extend grace, even when the people we loved did or said something that was unintentionally hurtful or misguided. Remember they are learning how to support you through your journey. 

• TEACH YOUR CHURCH ABOUT YOUR CHILD

​We recently hosted an event in our church just for families that have a child with special needs. Our volunteers showed up in record numbers – they were excited to serve and ready to love on people. But I discovered many of them were also nervous. They were worried they would say or do the wrong thing, or not know how to talk to a child with a disability. I walked them through how to talk to a non-verbal child, I reminded them that for a child with sensory aversions, a high-five is a better option than a hug and that a smile goes a long way. It is OK for you to teach your church the best way to interact with your child. Most likely, they want to be a part of his/her life but need to know the best

way to do that! Brooklyn is non-verbal, so we encourage lots of high fives. Sometimes she returns them and sometimes she doesn’t, but it gives our church a way to interact with her in a meaningful way.

• BE CREATIVE

Your child might not fit the “Kids Church” model you have in place. Pray and ask God to give you creative solutions!
Over the years, Brooklyn has attended church:

• in a medical stroller
  
• in the preschool room even when she was the oldest child in the room
  
• with the help of a special sensory room
  
• with a one-on-one buddy
  
• with a paid caregiver
  
• and there are many weeks she hasn’t attended at all.

 As full-time pastors, one of our most difficult challenges has been learning how to pastor on a Sunday morning while caring for a child with special needs. There are some seasons where one solution worked for a while. And then it didn’t anymore, and we had to be flexible and change things up.
For us personally, in this season, Brooklyns’ needs are too challenging for a volunteer to handle. So, she either stays home with a paid caregiver, or comes to church with her caregiver. Brooklyn is 100% my ministry and my life during the week. For the few hours we are at church, these creative options allow us to focus on the task at hand. This might not be the case for you but be free to find creative solutions for the season you are in with your family and church. Remember your family is important, AND your church is important. I believe God will give you the wisdom to balance both, if that’s what you are called to!

• STAY CONNECTED WITH OTHERS

It is likely there is no one in your church that knows what it is like to be in your shoes. Raising a child with special needs is truly a journey you must walk through to understand. Be intentional about finding someone else who understands. I have discovered some amazing online groups and have been able to connect with parents of children who attend the same school that Brooklyn attends. I also have great friends who are parents of typical kids who love Jesus and are there to listen and pray for me. You need both!
If you need a listening ear and don’t know who to turn to, I will return every text, phone call, or email I receive at [email protected], 765-430-6095. You are not alone! 

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Susie Melnick and husband, Mike, minister together in Marcy, NY at Mohawk Valley Church. Susie connects and encourages women through the ministry, The Pink Seat. You can find more info at The Pink Seat Private Group on Facebook. 
Thank you, Susie, for sharing this part of your journey with us.