A few days ago, I dropped something on my toe and cut it. I didn’t think much about it until Casey saw the band aid and said “Band aid toe!” and oh – the memories that brought back! It was one of those times that had I known what autism was, I would have definitely seen it in Casey at that point.
She had just turned three. At that age, she had quirky habits that made us all wonder what was going through her head. She had a few words, but didn’t feel the need to say much. She panicked when I left her – even if she could see me walking to the mailbox and back. She cried when left with anyone. But, she also had a brand new baby sister that she loved to sit and watch.
She would lay beside Mandy and hand her toys and when Mandy wouldn’t take them (she was only a few weeks old) Casey would “talk” to her and make the toys work. She loved to give Mandy her binky and she ran to check on her if she cried. She tucked her blanket around her and shared her stuffed animals.
For her birthday, she got a new red tricycle. She loved to stand on the back of it and push with one foot as much as she loved riding it. One day, she cut her toe as she was doing this. She didn’t worry about the blood. I cleaned the toe, added and band aid and a kiss and off she went. But…. that was the start of a few very, very long months.
Because the cut needed to be covered, I put a new band aid on it after her bath for a day or two. The next time she took a bath, it didn’t need one. And she lost control. She screamed “Band aid toe” over and over until I covered it again. As soon as she had the band aid, the screaming stopped and she ran to check on Mandy and watch TV before bed.
I thought maybe it was still sore – and really, what was a band aid? I had no way of knowing how badly she hurt. Until the next night and the next and the next…. if the band aid wasn’t waiting when she got out of the bath, the screams started. I tried reasoning with her (Hey – I was young and dumb – what can I say??) I tried bribing her. I tried to keep my cool. We went through a box of band aids and I bought another box. For weeks, she screamed without the band aid.
I’m sure many may think – “Let her scream – she’ll stop.” Yep – I knew that. But – we had just moved into our house and I was still trying to get organized, I had a new baby and Casey. By the time bedtime came, she could have the whole damn box of band aids if it meant she would settle down. After a few months, someone else took the decision away from me and told her no. She screamed for hours. Mandy cried. I cried. None of us slept much that night.
The next night, she never mentioned a band aid. I knew it had to be done that way, but I was just too tired to do it.
She continued with her quirks and her singing. She could sing the ABC’s and count to 30 at 15 months – but couldn’t say Mommy. She started speech therapy. We started our journey of looking for help. The following spring, she refused to stop wearing her gloves. She was fine wearing shorts and not pants. She didn’t care about wearing a coat. But she refused to go anywhere without gloves. She wore them to preschool. She wore them to the store. She wore them to grandma and grandpa’s house,even as the temperatures rose into the 80s.
Then one day, we were going to see my parents and a glove was missing. She went ballistic. I looked everywhere for it, just to get the screams to stop. Finally, I said we were leaving without it. And hell came to our house. She refused to walk to the car. And my stubborn streak came out. I put Mandy in the car and picked Casey up, kicking and screaming. I am lucky no one called the police on me – she sounded like someone was beating her.
I tried to get her in her car seat. She gave me a good head butt and I lost my temper. I calmly held her back to snap the buckles and told her she would never, ever wear gloves again. Not something I am proud of – please don’t do this to your little one. Now, I understand her need for routine. I understand autism more. At the time, I had just had it. I was done. She screamed all the way to my parents. She screamed there and tried to run back to the car.
Then she stopped. And I cried because only a terrible mom would tell their child she would never get to do something she obviously needed to do. Today, I would see autism. 28 years ago, I saw a stubborn child with quirks that needed to change.
But – those two incidents helped find a diagnosis for her later that summer. Both were important details to help her neurologist help us. I hope more parents are aware of the signs of autism in young children and look for help instead of waiting. Early intervention is so important! Don’t be embarrassed – and don’t let anyone tell you to ignore your gut feelings. If you sense something isn’t right, find help. If the first person won’t help, find another.
You will have to be as strong-willed as our kids with autism. You will have to stand up for your kids. Don’t be intimidated by people with lots of letters after their name. They may have years of schooling – but you are the expert on your child. Make them listen or go somewhere else.
And try to be patient at your child’s routines. They can drive me batty at times, but I try to remember to leave us enough time to hop through doors, pat the socks, fairy dance through the kitchen and latch all the doors. Some routines may last for years (folding socks, anyone?) but others may disappear as quickly as they started.
We all love our routines – they just take that love to a new level! 🙂