The Special Needs Journey 

Taking the Hills and Valleys Like a Champ

Shamarra Rose

Greenville, South Carolina

Confusion. Chaos. Triumph. These are just a few of the words that come to my mind when I think of my journey as the parent of a special needs child. The journey itself is long and hard, unchartered, and unprecedented in the life of a young parent. It cannot be predicted or planned for. It is one of the greatest tests of life. As I reflect, I’d like to offer some words of encouragement from my own journey.

When our son was around 2 years old, there were a few differences we noted between him and his sister, who was four at the time. He wasn’t talking yet, was very averse to crowds, did not play with toys in a typical manner, and had developed several very strange behaviors. I wasn't particularly alarmed; I just thought he was “different.” One of the young ladies who worked with us in the teen ministry was a speech therapist. Having observed my son quite often, she shared a few concerns with me. Her initial observation was that he should be saying more words for his age (he was 18 months old). She said she would call me later and ask me a few questions over the phone. I was already shaken. After doing a brief assessment of him, she recommended that I schedule an appointment with a local government agency that would come to my home to test him. They did, and found him seriously delayed in several areas. He began speech and occupational therapy immediately and was assigned an early interventionist. When he was three, he was tested for autism and shown to be on the spectrum. I had no idea what this meant for his future. Would he be able to show us love? Would he ever be able to have a conversation? Would he be able to hold a job? I cannot describe the incredible cloud of sadness in which I was enveloped. I retreated to my closet to cry often. My heart and soul hurt. I could not understand many of the things my son was thinking and doing. I called out to God like never before, in total despair. And all of this while working full-time in the ministry, tending to the responsibilities of raising my daughter -- a Kindergartener, and being an attentive and encouraging wife. It was the worst of times, in most ways.

Those things took place many years ago. Two weeks ago, this same son celebrated his 18th birthday. I am now standing in a place I thought I would never reach — a position of reflection. This son has had defeats and triumphs, become an amazing writer, an empathetic listener, and a conscientious friend. There have been many hills and valleys, and many tears have been shed, but God has remained faithful through every battle. While I know our journey is far from over, there are several thoughts I want to offer young mothers who are now in the position I was once in. I desire to soothe, if I can, just a bit of the pain and anxiety they are likely feeling. Here are a few keys I have learned that helped me stay upright on my journey. 

Recognize the test at the time. One thing I feel I did right was that I recognized I was being tested at the time of the test. Through the sadness and despair, I knew that what I was experiencing was both special and abnormal. I knew it was a stormy time. I knew God was present and watching. My bet was that he was rooting for me to exercise my faith and to believe in his power. I had a feeling that the time of despair I was experiencing might be finite. I had a mustard seed of faith that things would turn out all right. During this time, I remember being asked to be the keynote speaker at a women’s day. I could not have been asked to share at a worse time, or so I thought. It almost felt divinely arranged — that in my testimony, the stage would be set for me to declare “things that were not as though they were.”

Pray impossible prayers. During my sermon that day, I stepped out on faith and shared a few “impossible prayers” with the women listening. Among these prayers was a vision I had of my son engaged in conversation with people. I shared the dream with the audience with faith, confidence, a great desire to see it fulfilled, and through tears. I knew that there was power and impact in verbalizing my prayers. I knew that it took faith to share them. I wanted to give God something to work with. Deep inside I knew that God could not be limited and could answer my prayers. 

Lean On Faithful Friends. A small, close-knit circle of friends knew everything I was going through. They knew about each test my son was taking, and they knew about all the assessments. They knew how sad I was. They knew when I showed up to church and didn't want to be there. I consistently shared my burdens with a few friends that I knew were able to withstand their weight. They could look at my face and know what kind of day I was having. 

Be confident of God’s presence. Know that God is with you on your journey, every step. Realize that the journey is tailor-made for the individual. Every parent of a special needs child will have a different experience. But regardless of what your story is like, don’t compare yourself to other parents, and believe that God will give you everything you need. Take things one day at a time. 

As I said before, our journey is far from over. As our son continues to grow, he will continue to meet obstacles and he will continue to overcome them. I say this with faith and because God has proven this throughout my journey. My prayer for the moms who are on a journey like mine is that they will hold on to their faith — even if it is only as big as a mustard seed. We serve a faithful God. He listens to our prayers and answers them.