Autism and Tourette’s

Today I want to mention Tourette’s Syndrome a condition that frequently accompanies autism. My father does not have autism but he has Tourette’s. For him it presents as uncontrollable blinking, facial grimacing, and throat clearing when he is tired or stressed. My youngest GJ will jerk his arm toward his face in the same way the main character does in this movie. It is difficult for him because it’s not something he can control and it causes people to stare. I am so impressed with how other cultures around the world are seeking to compassionately educate people on this topic like in this Hindi movie I watched about a month ago:

Giving is Really Living

Focusing on others and their needs is what makes life a fulfilling adventure. Solving a problem that makes a person’s life easier or finding the words that lift their spirit. This song expresses it so well:

I just want to build you up, build you up
till you’re good as new
What a privilege it is to love
A great honour to hold you up

Great to Greater

Sometimes I have to remind myself : Success is not a sign of God’s favor. Suffering is not a sign of God’s disapproval. 

Imagine you are a contestant on television’s, “The Voice”. You sing what you know about love, and a chair turns. In fact, four chairs turn, and on one of the chairs sits God. He says, “You have the potential to be a star. Will you let me take you further? Will you let me put you through the training necessary to become greater, and to love in a greater way even if it is difficult and painful?” Click the link below 🙂

https://streamable.com/o/s7gezl#?secret=IxpGY1Ck7i

Those who are wise will shine like the brightness of the heavens, and those who lead many to righteousness, like the stars forever and ever.” The Angel Gabriel

Look what a company of constellations!
Say can the sky o many lights contain?
Hath the great earth these endless generations?
Are there so many purified thro’ pain?

F.W.H. Myers

Wrong Train Right Station

I think I will also do a little movie talk today. 😉 Today I am marvelling at the fact that we might have an idea or goal in mind and God will use our efforts toward that goal while turning their impact in a totally different direction. Sort of like a lunch box that arrives at a different location then what we intended. I started my blog because I felt disconnected from family and old friends. They said it was because of my lack of communication. I was unable to get out with my children because of their high needs but was left isolated year after year because no one would visit us. I always want to examine myself to see where I might be at fault so when I found myself with free time I decided to communicate in a blog so that I wasn’t constantly repeating myself and everything was consolidated in one place. None of my friends or family have responded. Although this makes me sad I have happened upon another community and group of online friends that are so encouraging to me.

“Sometimes the wrong train gets you to the right station.”

The Princess and Curdie Part 7

It much increased Curdie’s feeling of the strangeness of the whole affair, that, the next morning, when they were at work in the mine, the party of which he and his father were two, just as if they had known what had happened to him the night before, began talking about all manner of wonderful tales that were abroad in the country, chiefly, of course, those connected with the mines, and the mountains in which they lay.

At length they came to speak of a certain strange being they called Old Mother Wotherwop. Some said their wives had seen her. It appeared as they talked that not one had seen her more than once. Some of their mothers and grandmothers, however, had seen her also, and they all had told them tales about her when they were children. They said she could take any shape she liked, but that in reality she was a withered old woman; that she was never seen except at night, and when something terrible had taken place, or was going to take place—such as the falling in of the roof of a mine, or the breaking out of water in it.

She had more than once been seen—it was always at night—beside some well, sitting on the brink of it, and leaning over and stirring it with her forefinger, which was six times as long as any of the rest. And whoever for months after drank of that well was sure to be ill. To this, one of them, however, added that he remembered his mother saying that whoever in bad health drank of the well was sure to get better. But the majority agreed that the former was the right version of the story—for was she not a witch, an old hating witch, whose delight was to do mischief? One said he heard that she took the shape of a young woman sometimes, as beautiful as an angel, and then was most dangerous of all, for she struck every man who looked upon her stone-blind.

Peter ventured the question whether she might not as likely be an angel that took the form of an old woman, as an old woman that took the form of an angel. But nobody except Curdie, who was holding his peace with all his might, saw any sense in the question. They said an old woman might be very glad to make herself look like a young one, but who ever heard of a young and beautiful one making herself look old and ugly?

Peter asked why they were so much more ready to believe the bad that was said of her than the good. They answered, because she was bad. He asked why they believed her to be bad, and they answered, because she did bad things…One went on to tell how one night when his grandfather had been having a jolly time of it with his friends in the market town, she had served him so upon his way home that the poor man never drank a drop of anything stronger than water after it to the day of his death. She dragged him into a bog, and tumbled him up and down in it till he was nearly dead.
“I suppose that was her way of teaching him what a good thing water was”, said Peter; but the man, who liked strong drink, did not see the joke,

“They do say,” said another, “that she has lived in the old house over there ever-since the little princess left it. They say too that the housekeeper knows all about it, and is hand in glove with the old witch. I don’t doubt they have many a nice airing together on broomsticks. But I don’t doubt either it’s all nonsense, and there’s no such person at all.”

And so they went on with one foolish tale after another, while Peter put in a word now and then, and Curdie diligently held his peace. But his silence at last drew attention upon it, and one of them said:

“Come, young Curdie, what are you thinking of?”

“How do you know I’m thinking of anything?” asked Curdie.

“Because you’re not saying anything.”

“Does it follow then that, as you are saying so much, you’re not thinking at all?” asked Curdie.

“I know what he’s thinking,” said one who had not yet spoken; “he’s thinking what a set of fools you are to talk such rubbish; as if ever there was or could be such an old woman as you say!”

“I think,” said Curdie, “it would be better that he who says anything about her should be quite sure it is true, lest she should hear him, and not like to be slandered.”

“But would she like it any better if it were true? said the same man. “If she is What they say—I don’t know—but I never knew a man that wouldn’t go in a rage to be called the very thing he was.”

“If bad things were true of her, and I knew it,” said Curdie, “I would not hesitate to say them, for I will never give in to being afraid of anything that’s bad. I suspect that the things they tell, however, if we knew all about them, would turn out to have nothing but good in them; and I won’t say a word more for fear I should say something that mightn’t be to her mind.”

They all burst into a loud laugh.

“Hear the parson!” they cried. “He believes in the witch! Ha! ha!

Thus they all mocked and jeered at him, but he did his best to keep his temper and go quietly on with his work. He got as close to his father as he could, however, for that helped him to bear it. As soon as they were tired of laughing and mocking, Curdie was friendly with them, and long before their midday meal all between them was as it had been.

But when the evening came, Peter and Curdie felt that they would rather walk home together without other company, and therefore lingered behind when the rest of the men left the mine.

Movie Talk

Lately I’ve been focusing my attention on what is known in the world of autism as echolalia. Echolalia is the language our kids repeat verbatim from other sources. My oldest EJ does this a lot. I often refer to it as “movie talk” as most of the lines he repeats come from favourite movies. My youngest GJ used to do this but has become silent with his current medication. What most people and educators don’t understand is that echolalia is not just a behavioural quirk that some kids with autism display that needs to be ignored or extinguished but that it actually serves a purpose and is part of the process by which they understand and come to use language. A woman by the name of Marge Blanc has done extensive research on this issue and has helped many autistic children that process language in this way. You can read more about her work in Natural Language Acquisition on the Autism Spectrum: The Journey from Echolalia to Self-Generated Language.

Marge Blanc teaches that children with autism who use echolalia are showing that they are gestalt processors instead of analytic processors. This means that kids on the spectrum do not have a language disorder at all, but merely a language delay. Echolalia is the “language soup” from which useful phrases will be extracted when the time is right. They look to whole stories, whole ideas, and whole patterns as their prime sources of meaning.

Temple Grandin who displays a similar learning style to that of my children used to employ echolalia when she was a child. She explains her experience saying “Well what happens is…as I get more and more phrases on the hard drive, I can recombine them in different ways, and then it’s less tape-recorder like…it’s gradual learning…you gradually just keep getting better and better and better.”

It can help to see the stages that a gestalt learner passes through.

Stage 1 – multi-word language “gestalts” are used communicatively

Stage 2 – these gestalts are broken down/mitigated into two parts and recombined with other language chunks to produce semi-original utterances

Stage 3 – these phrases are further broken down into single words and word-parts, or “morphemes,” and kids begin to generate their own original sentences.

Stage 4 – Generation of more complex sentences.

In her article Finding the Words Marge relates the following experience:

“With Daniel the language acquisition process was easy to see…if you knew what you were looking for, that is! When we first met him, he was nearing four years old, and he could recite numerous lines from favourite videos. His mother knew all the lines, and could say the preceding and following lines, a strategy she used to create verbal interactions with her son, and to “keep the conversation going.” Karen was doing more than that, however but until she met us, she wasn’t aware of it. What Karen was doing was many-fold: she was confirming her child’s interests and intentions by joining him, she was acknowledging his language as communicative, she was creating emotional and social reciprocity, and she was allowing her child plenty of practice with language at the first step of the gestalt language process!”

“We helped Karen learn to build useful, flexible “gestalts” into their daily lives….What we did with Daniel’s family was create home-made videos they could watch together. We made sure our language was fun and lively, like Walt Disney’s, but more predictable, and lent itself to ready mitigation. Repetitive games and stories were also created so Daniel could hear, “Let’s play with the…” and “It’s a…” a bazillion times a day.”

“The animation and language of movies make them a hard act to follow. Fortunately, real life provides the motor experiences our kids crave, and people who know how to make them fun! Our play had to be active and exciting and our language had to be delivered with enthusiasm and all the theatrics we could muster…We wanted to compete successfully with Hollywood, so we created extremely fun, movement based experiences that just happened to include basic sentence forms like, “Let’s…”, “Hey, it’s….”, etc.”

“We try to help the kids make the most of stage 3. We set up situations where all sorts of conceptual categories naturally “ bump into” each other, and we help kids put words to these conceptual combinations….It is a matter of combining your intimate knowledge of your child’s loves with his current sensory motor system.”

“If I had decided to work at Stage 3 (single words) or Stage 4 (“I want..”and “I see….”for example), I would have made the most common mistake of well-meaning adults working with children on the spectrum…..And I would have met a dead end, like we usually do with children on the spectrum.”

Ugh this is so the fruitless approach that is constantly taken by the education system with my children! Lots to think about. I’m thinking of going into film making and animation for kids with autism, lol. 🙂

Anxiety – Vital Dust

Sometimes we forget how small we are. Sometimes we just hate how small we are. Doesn’t change the fact that we are small.

“For He (God) knows how weak we are; He remembers we are only dust.”
King David

Maybe this comes from the fact that we are terrified of being insignificant. But what if we aren’t insignificant? What if we are small and vital at the very same time?

Taking children with nonverbal autism to the park can often be a stressful ordeal. One of the reasons is that my children love to throw sand in the air. People might perceive this behaviour to be malicious or just immature but let me share what’s really going on. It’s simple. They derive great pleasure from the beautiful spectacle of dust particles reflecting light. They just can’t get enough of tiny little things that shimmer and shine. These tiny little things have no light of their own but when exposed to the light they glitter.

What if God just has a little thing for us to do but it’s really important that we show up and do that little thing? What if we provide the dust and He provides the light? A lot of our anxiety comes from taking ourselves too seriously and our role not seriously enough. We self examine to the point of despair, and while this preoccupation with our inadequacies paralyzes us, we fail to do the thing we are specially equipped for.

“Do not despise the day of small beginnings, for the Lord rejoices to see the work begin.”
The Prophet Zechariah

Don’t despise yourself. If you are afraid of tasks or afraid of relationships because you feel that you are just not enough, your humble act of faith is demonstrated by getting up and engaging despite how you feel. This feeling of “not enoughness” plagues me constantly but like Moses before the burning bush, God knows that I am “slow of tongue”. He made me that way. He has taken my weaknesses into account and He is still calling me to step out and be part of what He’s doing.

The clock in the Elizabeth Tower of Westminster Palace and it’s massive bell Big Ben have been keeping Londoners on time for over 150 years. It maintains accuracy to within one second and it does this by relying on gravity and pennies. That’s right, pennies! As gravity pulls huge weights down the clocks gears rotate and the pendulum swings. The precision of the pendulum is adjusted by placing pennies on the mechanism. Something small yet vital.

Today a fellow blogger was writing about the Jewish New Year or Rosh Hashanah. The image that stayed with me from what he shared was that of the blowing of the shofar or the rams horn. Among other things one of the purposes of the blowing of the shofar is to serve as a spiritual wake up call. One writer said it was a call to wake up to reality. I’m going to let this post serve as a reminder and wake up call to myself. A reminder of the reality of how small I am and how great God is and how vital my little role is nonetheless.

That reminds me of another ram. A ram that God provided on a mountain in the place of Abraham’s son Isaac. (Genesis 22) Show up, do your seemingly silly little thing in love’s service and watch God provide what’s lacking.

.



Photograph

I recently watched this movie written, co-produced and directed by Ritesh Batra on Amazon Prime. What a beautiful film. It speaks to the idea that a really great photographer has the gift of capturing the heart and the inner light of those they photograph. The story follows a street photographer Rafi (Nawazuddin Siddiqui) who sees goodness in Miloni (Sanya Malhotra) the woman he photographs. I recently had an old friend who is a photographer take the time to do the same for me. I wanted to send photographs to my boys in which I was looking at them the way I have for the past 12 years. She did an amazing job distracting me and getting the image we were looking for. I look forward to when we can return to her and have family pictures done. If you live in the area and are looking for an empathic photographer who has the patience and understanding to accommodate families with kids on the spectrum Meg at Leamington Photography is the one to call. Thanks Meg! https://leamingtonphotography.com/

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. He chose to give us birth through the word of truth….James 1:17,18

God is light, and in Him there is no darkness at all….If we walk in the light as He is in the light, then we have fellowship with each other…1 John 1:5,7

“It may be that you are not yourself luminous, but that you are a conductor of light.” Sherlock Holmes, The Hound of the Baskervilles

In Him was life, and that life was the light of all mankind. John 1:4

The Princess and Curdie Part 6

A great fear, such as he had never known before, came upon Curdie, and almost overwhelmed him. He groped his way to the door, and crawled down the stair—in doubt and anxiety as to how he should find his way out of the house in the dark. And the stair seemed ever so much longer than when he came up. Nor was that any wonder, for down and down he went, until at length his foot struck a door, and when he rose and opened it, he found himself under the starry, moonless sky at the foot of the tower.

He soon discovered the way out of the garden, with which he had some acquaintance already, and in a few minutes was climbing the mountain with a solemn and cheerful heart. It was rather dark, but he knew the way well. As he passed the rock from which the poor pigeon fell wounded from his arrow, a great joy filled his heart at the thought that he was delivered from the blood of the little bird, and he ran the next hundred yards at full speed up the hill. When he reached home, he found his father and mother waiting supper for him.

The eyes of fathers and mothers are quick to read their children’s looks, and when Curdie entered the cottage, his parents saw at once that something unusual had taken place. When he said to his mother, “I beg your pardon for being so late”, there was something in the tone beyond the politeness that went to her heart, for it seemed to come from the place where all lovely things were born before they began to grow in this world. When he set his father’s chair to the table, an attention he had not shown for a long time, Peter thanked him with more gratitude than the boy had ever felt in all his life. It was a small thing to do for the man who had been serving him since ever he was born, but I suspect there is nothing a man can be so grateful for as that to which he has the most right.

There was a change upon Curdie, and father and mother felt there must be something to account for it, and therefore were pretty sure he had something to tell them. For when a child’s heart is all right, it is not likely he will want to keep anything from his parents. But the story of the evening was too solemn for Curdie to come out with all at once. He must wait until they had their porridge, and the affairs of this world were over for the day.

But when they were seated on the grassy bank of the brook, then he felt that the right hour had come for sharing with them the wonderful things that had come to him. There to the accompaniment of the water, Curdie told his tale, outside and in, to his father and mother. Neither of them said a word until he had ended.

“Now what am I to make of it, Mother? It’s so strange!” he said, and stopped.

“It’s easy enough to see what Curdie has got to make of it, isn’t it Peter?”said the good woman, turning her face toward all she could see of her husband’s.

“It seems so to me,” answered Peter, with a smile which only the night saw, but his wife felt in the tone of her words. They were the happiest couple in that country, because they always understood each other, and that was because they always meant the same thing, and that was because they always loved what was fair and true and right better, not than anything else, but than everything else put together.

“Then will you tell Curdie?” said she.

“You can talk best, Joan,” said he. “You tell him, and I will listen— and learn how to say what I think,” he added.

“I,” said Curdie, “don’t know what to think.”

“You remember, Curdie,” said his mother, “that when the princess took you up that tower once before, and there talked to her great grandmother, you came home quite angry with her, and said there was nothing in the place but an old tub, a heap of straw—oh, I remember your inventory quite well!—an old tub, a heap of straw, a withered apple, and a sunbeam. According to your own eyes, that was all there was in the great, old, musty garret. But now you have had a glimpse of the old princess herself!”

“Yes, Mother, I did see her.”

“And there is this in it, too, Curdie—of which you would not be so ready to think—that when you had come home to your father and mother, and they find you behaving more like a dear, good son than you have behaved for a long time, they at least are not likely to think you were only dreaming.”

“Still,” said Curdie, looking a little ashamed, “I might have dreamed my duty.”

“Then dream often, my son; for there must then be more truth in your dreams than in your waking thoughts. But however any of these things may be, this one point remains certain: there can be no harm in doing as she told you.”

“Yes, Mother, I’ll do it,” said Curdie.

Then they went to bed, and sleep, which is the night of the soul, next took them in its arms and made them well. 

Rapid Prompting-Soma Mukhopadhyay

One of the many amazing and inspirational people seeking to give a voice to nonverbal children with autism is Soma Mukhopadhyay. She refused to give up on her child Tito and in the process developed a teaching and communication approach that is allowing many kids with autism to finally be heard. There are many subgroups in autism and my observation is that this technique known as RPM is super effective for nonverbal kids who have strong auditory skills and memory. My children unfortunately do not fit into this category as they are visual gestalt learners. You will find reports that RPM doesn’t work and is not scientific but this is because respect is not given to the diversity of learning styles within autism. It’s so important to get a deeper understanding of autism then the one that the media provides. There is an attitude of hopelessness that leads to complaining about lack of services instead of seeking to do what we can with what we do have. Soma is an incredible example of a mother who daily in a hidden place with no recognition and no applause rose to the challenges that love gave her. Her work did not remain hidden forever. It is now evident in her sons life and the lives of many others. Don’t give up doing what you know to be right even if no one else believes as you do. There are many more subgroups of autism that need the devotion of all our heart and strength and mind. Galatians 6:9 “Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.”