Occasions and Developmental Disabilities

Brought up in a Christian household, I loved the ramp-up to all our dutiful occasions. My mother’s frantic preparations days and weeks before, depending on the celebration, were an equal part of the excitement and anticipation. Easter although solemn was still fun because I got to wear my new spring coat and patent leather shoes. But Christmas Day was the most important occasion to me. My cousins and their parents came to visit, exchange gifts and stay for dinner, a wonderful respite from my only child world.

Decades later, and married with three children, the must-do celebrations took on a different meaning for me. The lack of comforting routine confused and frustrated Matthew, our oldest child. Most of the year, he got through his day relying on sameness; eating the same breakfast, being able to choose his outfit each morning and going into the community with his job coach at the same time each day, returning home at the same time each afternoon. Then his day ended with dinner, a long bath, bible reading and the singing of Jesus Loves Me by his caregiver.

Christmas celebrations were probably the hardest on him, because the tension ramped up then went on for longer than his brain’s ability to cope. He’d watch from a distance as the rest of us put up the Christmas tree and decorated it. He refused to put on even one bobble. Until the tree came down, he went out of his way to walk way around, giving it only the briefest of sideways glances.

But the emotional change in Matthew had the greatest impact on him and the family. He had never learned to use words to express himself and communicated with his own version of sign language. He improvised signs for coffee, toilet, please, thank-you, car ride, food and bath – all the things that added up to a good day for him. And, with no sign for what the hells’ going on, he’d lose his temper to express frustration.

When it wasn’t Christmas or any other disruptive occasion, we had to guess what the problem was, usually minor. His irritation was almost always due food and drink and not enough of it. Soft drink dispensers could set him off, particularly Coke machines. We learned where these were in every mall and arena and avoided them as best we could.

Around the festive season, issues that would normally have provoked a minimal response, displayed by slapping his hands together, brought on shouting, stomping, hair-pulling melt-downs.

But Matthew was one of three children in our family of six which included my mother, a widow. Celebrations were welcomed by the majority. How else would we explain gifts from Santa when the children were little? The fireplace was built just for that purpose, we’d told them. And Santa had to place the gifts somewhere.

So, I had a chat with Matthew. He gave me rare eye contact when I made a solemn promise to him. We’d always put the tree in the same spot. We’d use the same tree ornaments every year – not difficult because they were made by our kids and I’d never have replaced them for more sophisticated versions. The same decorations would go in the dining room as well. I reminded Matthew that by now, he was used to seeing them all.

I told him it was the best I could do to try and please everyone and did he understand? His reply was a rapid up and down motion with his right hand. Yes.

And for years, Christmas, that emotionally charged, happy/sad season, carried on with some objections from Matthew but I felt, with a grudging acceptance of what had to be. After all, a deal was a deal. Until…

We were seated around the dining room table; my husband and me, our three kids and my mother. My husband was about to carve the turkey. And because of my solemn promise to number one son, a little felt Christmas tree with tiny bells sewn on the ends of the green branches, sat in the middle of the table. As it had for many years.

The decoration was a rescue item from one of mom’s friends who had decided to throw out. My kids played with it during many Christmas seasons. The cloth branches had lost their will to stand and the little tree kept flopping over onto the turkey. After fruitless attempts to right it, I placed it on the buffet behind me.

Matthew’s eyes followed me. Then his gaze became fixed on the buffet. He fidgeted in his chair, making sounds of objection, signalling a possible melt-down. He rose from his seat, walked over to the buffet, grabbed the little tree and triumphantly slammed it back on the centre of the table. He took his seat once again and glared at me. I read his thoughts.

Mom, a deal is a deal.