Guest blogger Jennifer Jett shares the story of her son’s diagnosis, comparing her experience to a storm.
I like to think of the last few years as a storm that slowly blew in without too many people noticing. I was teaching school and raising my 2 boys Walker who was 6 and McLane who was 3 years old at the time. I look back and read some of my notes I wrote in McLane’s baby book: loves to run, wild, hard to control. Now it all makes sense. Little things started to come into view: McLane loved to line up his cars-not play but line them up, stare out the window and not turn when his name was called-like being in another world, repeating word for word parts of a movie (Charlie Brown Halloween to be exact), few words being spoken, and very little interaction with his brother. It was like I couldn’t turn my back for even a moment because I didn’t know where McLane might go. You could say this is when the rain started and it would continue to rain for months.
Since I am a teacher I knew about the preschool clinic and how they evaluated kids for delays. Delays- that is the word I used and how I explained to others. I made an appointment and took McLane to school. This day was one of the darkest days of the storm – the not knowing and hearing the cracking of my voice as I explained to the psychologist – my fears come back to me as I hear other people’s stories. That day was the very first time I spoke about my McLane’s weaknesses to someone outside my family or close circle. That day was the first time I asked for an autism evaluation. That day was when the storm blew through my life and removed all the safety nets that helped guide me as a parent. I no longer knew what to expect and I had no radar to point me in the right direction.
Evaluations would follow. For the next 2 months, we had in home and in clinic evaluations. They observed. I observed. They asked and I answered. I prayed. I prayed for everything to be “normal” and I prayed that they would say he would catch up. As I prayed and watched I can honestly say I already knew. I knew that my child was not typical and there were things I couldn’t explain. The day of our results meeting I found myself in the middle of a storm and I knew it was going to take a great deal of time to make it through. As my husband, Jimmy, and I sat and heard the results, I remember him asking about McLane future as I sobbed. I sobbed for the child that was going to face many hurdles and I sobbed for the child that I was so scared for and I sobbed because I felt robbed. As she showed us the results she explained how McLane had met qualified in all of the categories and she explained how his speech was also a major weakness. The next few days I cried each time I thought of autism. I did not know anything about it and I had no examples to follow or base my next steps on. The storm clouds darkened and I closed myself in and stayed very scared for the next week and then the rain stopped.
My very best friend, Cynthia, who always has encouraging words gave me a little plaque that read, “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future”. It gave me a sense of calmness that I needed as I stood in the middle of a storm. The plaque reminded me that when everything is chaotic, God will show me the way.
I got online and googled autism, I printed out the first 100 day kit, I made phone calls, and I entered this storm for the first time with some storm gear and was ready to begin to walk through it. You will notice I did not say run or pass…I slowly began to walk in the storm. McLane entered the 3 year old special education preschool 3 days a week (my heart broke as I read and signed the paperwork for special ed-it isn’t easy seeing those words). We began ABA therapy driving to Sumter 2 days a week (they said if we drove to the clinic we could start right away), we began speech 2 times a week, and my life preserver- Adrianna Kleckley entered the storm with me. She was my early interventionist provided by Bright Start. She would end up coming to our house once a week for the next 3 years. Our lives were turned upside down: we had therapists in and out of our home weekly and McLane and I would constantly be at therapy clinics. I was teaching and Walker who was in the first grade still needed a normal routine in the middle of this downpour. Another safety net in this storm was my Mother. The days I was gone to Sumter she would pick up Walker. On the days I worked she would pick up McLane and take him to therapy. Therapies would sometimes take place in their home. My whole family really stood up and carried me across the puddles. My Dad and sister were always on standby: who did they need to pick up and where to take them would be the 2 questions they asked. We finished the 3 year old program and added occupational therapy, social group, and music therapy.
Even though storms can be loud and frightening they can also be beautiful. I can remember watching McLane begin to play- not line up but play with toys and interact with his brother. He went from not acknowledging him in the same room to screaming “Walker, Walker” when he came home from school. I remember the rain paused and I saw that he could read-not only did he know his letters at 4 years old he was reading on a kindergarten level. Rays of sunshine broke through on the day that we found out that he would enter kindergarten in a typical classroom with accommodations. This year he is in a regular 1st grade class.
McLane is sweet and funny. He loves to read. He loves to shop with a list that you must follow in order that it is written. He loves facts. He can label almost every country in the world. He no longer goes to therapy outside of school. He receives speech, resource inside the classroom, and belongs to a social group.
I wish I could say the storm has ended and there is no longer a chance of rain, but I think McLane will always be living with the storm. There are issues; clothing sensory issues, routines must be followed, communication, and friendships have to be worked at and we will face them over and over again. With every new school year and new Sunday School teacher, and new classmates, and new routines, we will open our umbrellas and step out in the rain. We will not stay inside and be afraid.
Would I want to change McLane? Not in the slightest….the storm that our family is living has changed us for the better. Jimmy and I are much better parents: more tolerant of others and considerate of differences. Walker has a tremendous amount of empathy for kids. McLane- well, I wouldn’t change him, but I definitely would take away the hurdles that he had to face and will face.
It has poured and the wind has howled in the last few years. We have put on our raincoats and boots and splashed through many puddles. Don’t get me wrong there are still days I read that plaque over and over remembering that God knows the plans ahead and there are days that I need my family to help me over those puddles. I believe that by using this storm as a testimony of my faith we may become a rainbow in your storm clouds. To quote Maya Angelou, “You may not be able to control all the events that happen to you, but you can decide not to be reduced by them. Try to be a rainbow in someone else’s cloud.”
Jennifer Jett, Mother