Like the fear of a fit or an episode with one of my children. Or, the fear of my child never learning what is the right or appropriate thing to do socially. Or the fear that something else will happen to put them in extreme danger like one of them wandering off. There is also a lingering fear that I am not going to do whatever they need to succeed (it will be my fault).Or maybe I am babying them too much. Will they ever grow up to lead independent happy lives? Will they get married? Will I ever have grandkids? Or maybe just the fear of the WHOLE DANG THING...
Before we knew anything about autism and before Lucy Kate was even born, Jay had his first "fit". We were with our playgroup from our church at the apple orchard. We had scheduled a hayride and a tour, and we were waiting for our turn. We had been there for awhile and all the other kids (mostly girls) were toddling around, pointing at things, and jabbering. Jay was not really paying attention to them. He was exploring, but on his own and I was chasing him around. I was in my first trimester of pregnancy with Lucy Kate. I honestly thought his behavior was a "boy thing", although we had two other boys with us and they seemed to want to be with the other children.
Out of nowhere, Jay gets upset. I mean UPSET! Crying, mad, fighting me as I was trying to pick him up, and there was no way to console him. The only thing I could think of to do was take him out to our car and separate him from everyone. This was more out of embarrassment than anything else. I didn't know it at the time, but it was the right thing to do. I didn't have any idea what set him off, but because I got him away from the situation, he was able to calm down. I watched from the car for signs that it was our turn to take the hayride, and thankfully we were able to join our group for the rest of the day. He was almost two when this first episode occurred.
The next time, we were at Kingdom Karnival, a celebration we have at our church as a substitute for Trick or Treat. He had just turned two September 29. In those days we had this party in the basement of our church and there was barely enough room to turn around! The place was packed with people, decorations, games, sound, and FUN. To Jay, it was too much! At first he seemed okay. Then suddenly he broke down again. I took him to the nursery and he slowly calmed and began to play happily with the toys. Michael followed me, and I told him that this was similar to what he did at the orchard, and the only thing I could think of was that he was "overstimulated".
It was about this time that I began to get concerned. I could not explain my feelings. Please remember this important fact - this was 10 years ago. Autism was NOT widely talked about and NO ONE seemed to know the first signs! His vocabulary was mysteriously disappearing when the other children seemed to be talking more and more. I told myself once again that this was a "boy thing" and that I should not worry about it. His doctor supported my theory and that helped. I kept my concerns for the most part to myself. I didn't want other people to think I was a worrier. Jay in general was such a HAPPY baby! He smiled ALL the time and rarely cried. He was SO content to play by himself and was easily amused by me and Michael. He slept well at night and took good naps during the day. He was easy to take care of. We went everywhere with him from day one and never had a worry about him being good and happy. Until...
I had Lucy Kate in March of 2003. It was becoming evident to me that something might be wrong. My sweet husband bought me "What to Expect From the Toddler Years" and I sat with a newborn in the bassinet beside me in the hospital, extremely hormonal, reading about how my sweet boy did not "meet certain developmental standards." YUCK! I felt my worst fear was being confirmed. I voiced my concerns to Michael, but then shoved them aside.
Life became complicated... Dad had his heart issues and spent time in the hospital having heart surgery... I began my weight loss journey... we bought a mobile home and began getting everything ready at the site for it... I was raising a brand new baby and was trying not to worry about Jay who seemed happy to play by himself in his room or to watch tv... we painted and installed new flooring in our new home and after Christmas 2003, we moved (which was no small feat I must add)! I didn't know it at the time, but a dear friend who was an occupational therapist was watching Jay closely, and was starting to talk to my Mom about her observations.
Mom broke the news to me slowly and said that our friend wanted to come out to the house and just spend some time one on one with Jay. After her visit, she talked to us about sensory issues (what?), modulation, and developmental delay. She recommended that we get him enrolled into the Public Preschool after Christmas. UGH. "I am a TEACHER!" I thought. "I did not want my baby in school until Kindergarten! I am a stay at home mom! Public???"
I was so upset and torn up. I had NO idea what those words meant that she used to describe Jay. She did not use the word autism. I knew this was serious, but I had no idea what was coming.
Then, as I was on the edge of DESPAIR for my sweet boy and his future, my Pastor's wife followed me and Mom out her door after the annual Christmas tea she gives for all the women in our church. She had words of encouragement that changed everything! God was already speaking to me about faith and I was drawing closer to Him everyday in Bible study, but I NEEDED this personal word!!! She told me about her own struggles when she was young and how her mother would take her face in her hands and tell her that "this too shall pass!" They had been told she may never graduate and here she was a retired teacher! She got real close to me, looked me straight in the eye and said, "NOTHING IS TOO BIG FOR GOD! This just happens to be the struggle he will face. Everyone has SOMETHING. Some parents have to deal with their kids taking drugs, drinking alcohol, sleeping around, being rebellious... you won't have to. THIS is the struggle. And God has GOOD things for him. Take him to the public preschool. I worked there for years and they will know how to help him!"
So, there it was... which "Voice" was I going to listen to? The voice of fear? The voice of the giant named "Disability" or "Autism"? OR would I listen to the "Voice of Truth"? This song by Casting Crowns became the theme song for that time in my life.
God was trying to reassure me... He knew I did not understand. He knew this was the hardest thing I had ever faced. He was cheering me on, and letting me know that He would use this for His glory! He is in control and NOTHING is impossible for Him. I would have to choose every day to listen to Him and not give in to Fear. He has NEVER let me down yet!
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