The journey of parenting a special needs child

by Denise Songstad

In 1999, Bob and I were living in Phoenix, AZ and expecting our first child. During a routine appointment we found out the child I was carrying had Spina Bifida. We learned about an experimental surgery being done at Vanderbilt University that would be able to close the opening around our baby’s spine while I was still pregnant.  This would help to prevent further damage to his spine from the amniotic fluid. For the first time, Bob and I prayed together a prayer that was not a routine table prayer. I was a very new believer, and Bob was still uncertain of the truth God was teaching me through His word.

God led us to undergo the fetal surgery for our unborn baby at 24 weeks gestation. The surgery went well, and Aaron was delivered at 35 weeks. While Aaron was young, I was starting to grow in my faith and trust God in my life and my family’s life. I would occasionally meet with other moms and friends who recently gave birth to babies with spina bifida, and I would feel so encouraged. But the more we met, the more I knew something wasn’t right. Aaron wasn’t meeting his milestones like the other children. He would cover his ears and scream when another child would make a loud noise, and he would cringe when he would bite into foods like noodles or Jell-O and spit them out.

In 2001, we had moved to Minnesota, and two years later Aaron was diagnosed with an autism spectrum disorder with developmental delays. The grieving process was deep. I decided that if God could raise Lazarus, God could and was going to heal my son. I decided to demand this from God until it happened. I knocked on God’s door every second I had and pleaded for three days and received a very clear answer from God: “I want you to have peace with this.”

It wasn’t audible, but it was obvious. I’ve never felt God so close as I did in that moment. God has not left me or Aaron on this journey. In fact, scripture is full of God’s sovereignty in disability. Every time I would come across a verse like Exodus 4:11 when God said “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the LORD?” my heart would leap with joy! God is in this! I don’t believe God gives special kids to special people. I believe God gives us more than we can handle so that we stop relying on our own strength and instead rely on His strength.

2 Corinthians 1:8-9. …We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead.

God has encouraged and strengthened me in so many ways. When individuals include Aaron in their lives and acknowledge of him in their conversations, I receive one of the greatest gifts to my soul. I’m so grateful for the other seasoned special needs moms that motivate me by their perseverance and reliance on the Lord. There are many ladies at Calvary who might not have had much experience with special needs, yet they still seek to understand, support, and encourage me and my family. They are like a breath of fresh air.

For many years, I was able to participate in a Bible study for moms of special needs kids. This brought a great deal of relief as I saw that many of my struggles were shared with other moms. We also felt the deep joys when one of our kids would reach a goal that most typical kids would have met at a much younger age. The special needs mom’s Bible study will be meeting again at Calvary this coming fall of 2023…more details to come.

Now that Aaron is an adult, there are struggles that we don’t have anymore (like IEP’s) but, like any parent of an adult child, there are new struggles. Ours just look different. We still need to advocate, assist and help Aaron in areas of his life that are difficult for him to understand, such as times when it’s appropriate to exit through an entrance. When a door or sign says “Do Not Enter,” he is afraid that he’s breaking the law if he exits out of it. These types of scenarios can take a while to explain, as with a lot of individuals on the autism spectrum. This brings up occasional fears in me as I try to step back in areas that he is able to navigate independently like his work routine, and hope that nothing out of routine happens that day. Aaron also has daily medical routines due to his spina bifida that he needs some assistance with.

Rochester has some good programs for individuals with special needs through Park & Recreation Adaptive, Sled Hockey and Jenny Kruse Music Therapy to name a few. Music Therapy has been a great experience for Aaron. He especially loves the adaptive rock band that his teacher has put together. I have so enjoyed watching and hearing the progress he has made on the drums. Most other supportive programs like ABC and Possibilities are extremely short-staffed. Many of the support programs provide job coaches to help train or create job opportunities for individuals with special needs. This is creating some barriers to independence for many with disabilities.

So, if you see Aaron wearing ear buds or ear plugs in church, he’s not listening to music, he’s
trying to handle loud noises. You probably won’t see him writing notes with a pen in the
bulletin, instead he’ll use his iPad and let me copy from his notes if I miss anything!

Luke 14:13-14 – On the contrary, when you host a banquet, invite those who are poor,
maimed, lame, or blind. And you will be blessed, because they cannot repay you; for you will
be repaid at the resurrection of the righteous.