You Have Not Been Successful

While my son has a long way to go before he communicates at the level of Carly Fleischmann, it is interesting to get quick flashes into his thought processes every so often.

At his last preschool, there was a programme at every term's end, when the children would prepare a dance number, go onstage class at a time, in costume, and perform for their parents. This happened at the end of October, before Christmas break, and in March when school broke up for the year. As Little A attended that school full time for three years, he had many a "programme day."

While he generally did not like the noise and mayhem, Little A did like being around his classmates and having people there to show how proud they were of him. The feeling of being a part of something mattered, and we could see that.

As part of a self-imposed desensitisation programme to the sound of applause, he took to finding videos of children performing for parents. He searches youTube for videos of his favourite nursery rhymes performed by live children (or, for some unknown reason, Hindi cartoon characters), and recently typed the name of his school into the search bar as if to say, I no longer go to Toddlers (his old school was called Toddlers and Teachers), but I'm watching them perform anyway.

Over the weekend, on one of his many trips a day to play with the stray cat he befriended in the parking lot, the feline was not there. It sometimes disappears for a while, only to return a little later. Little A has taken to sitting in a particular spot and waiting for the cat to come out, asking me to call it by saying "Pah, pah," which basically means, "Meow, Mummy!" When I bring my mobile with me, he types "Cat meow."

This time, after sitting patiently for about 10 minutes (a huge feat for a child who can't watch a half hour tv show in its entirety), Little A gave up and stalked moodily back into the building. On the way, he gave a quick, annoyed scream, grabbed my phone, typed in a word and showed it to me. The word was "Fail," but before I could say anything in response, he deleted it and carefully turned on the caps lock key to spell "FAIL." He screamed again, once, quickly, to express his frustration, then calmly walked into the building.

It's funny how even non-verbal children pick up on the slang of their time. I never use the word "fail" colloquially, but he knows it means something didn't happen, as when our Internet connection is slow and the phrase "Failed to Open Page" pops up. He sometimes spells this phrase out with letter tiles, as if to tell us that the Internet is acting up again.

Lately, I've been explaining to him that he has Apraxia, and that's why it's hard for him to talk. I have yet to spell it out, but I know my clever boy will quickly see that this word contains the same letters as one of his current favourites - "Pixar" - and hopefully he will intuit that being non-verbal is not too bad, as long as there are other ways in which he can use his words to communicate.

Let's Eat

Ah, sustenance. The human being needs all sorts of literal and figurative nourishment, from the arts to the actual products of the land. Some people seem to live on coffee and cigarettes, others on chocolate and candy. Sushi and a good book could do it for me, though lately I've been favouring plenty of fruit and veg.

Little A, like most children, ate everything as an infant, though he really did not like applesauce or apples, and still won't eat them. Then he was diagosed with ASD and we attempted to rid him of gluten and casein. He no longer has dairy, and never liked sweets (fruit included) but we could never completely go gluten free because his favourite snack, corn flakes, are made with some sort of malt barley coating.

He went through a stage of liking three other snack foods - a sweetened corn snack, kettle popcorn and pretzels, but these days he has shifted firmly back into cornflakes territory. Real-food wise, he no longer eats pasta and bread, and has gone off broccoli and leafy greens, something he used to consume without complaint, so long as it was mixed into his meat-and-rice meal (think mixed fried rice in various combinations.)

Most recently, he's gone off soy-sauce based dishes as well, and only likes "orange food," or anything based in tomato sauce. At school, however, he will only eat processed breakfast food.

In my attempts to get him to eat healthier, I limit the processed meats to schoolday lunches only, so he has to eat "real" food at home. For a few days, this worked. But then the weekend came and he realised he was being cheated of his daily dose of additives.

He now comes into the kitchen, looks at what's cooking, and then at the food on the table. If it isn't to his liking, he puts a pan on the hob, climbs up to the cupboards, selects a tin of processed meat, and motions for us to open, and quickly cook it while he takes an empty plate to the table, pushing aside the one with the unpreferred food on it. This is accompanied by appropriately selected word cards or writing - "Sanuge" for sausage, or bacon, or Spam.

One of the establishing tenets of communication therapy is that what the child asks for, provided it is requested properly, they get immediately. It's a basic reward system to encourage them to communicate more. As they get better at it, the concept of waiting is introduced. Then they are made to choose between preferred and non-preferred objects, and finally between two non-preferred objects. I know when we get to that part on the food game, my little one will likely go hungry. I was a headstrong child and a very picky eater, likely the result of so many food allergies, and would fall asleep at the table rather than consume food I did not like. If he's anything like me, then I'm in for it. 

Wonder

The minute I spotted the song lyrics on the first page of this book, I knew it would be an amazing read.

Natalie Merchant's song tells of a child with disabilities who is, nevertheless, "one of the wonders of God's own creation." I have loved this song since it was released in the 1990s, not least because of the beautiful voice of its singer.

I hadn't heard the song in well over a decade, and reading the lyrics after so long made me realise that this song was written for Little A, and all others like him all over the world. Hearing it again brought tears to my eyes, as did reading RJ Palacio's wonderful first novel.

The book, while it does not deal with autism, is the story of a child who is different and who has spent, and will spend, the rest of his life trying to fit in and longing for true friends who will see beyond his differences to accept him for the person he is inside.

I would be lying if I said this wasn't my most fervent dream for my own son. He does not yet have a single real friend (the Au Pair and family don't technically count), and while he tries to interact with them, most children his age are very aware that he is different, and do not have the patience to cultivate a relationship. Little A, for his part, still does not sustain interest in other children for their own sakes, beyond perhaps a shared activity they both enjoy.

Still, I know this will always be a primary area of concern, and I know that as he grows older and more aware, Little A too will want someone to call a friend.

I loved this book, and do not hesitate to encourage readers of all ages to pick it up. Even if I wasn't the mother of a special needs child, I would appreciate the beauty of this novel. My godchildren of teen-age don't know it yet, but this book is what they'll be receiving from my family this Christmas.