Another world

 

When I was small we lived in Cape Town in South Africa. At the weekends, we would often go to the beach to surf. This wasn't the stand on a malibou board kind of surfing but a much more modest endeavour. I loved the thrill of those exhilarating waves. It was a game that I played well, considering that I was not as streamlined as torpedo but bore a closer resemblance to a little beach ball. I need to revive those skills if we are to have any hope of reaching solid ground. The shifting plates we exist on are turning to quicksand.

With any medication, timing can be an important factor. Many medicines come with lengthy warnings. Focalin comes with a whole manual. For my son, if the pill hits an empty stomach, the result it torture, mental anguish with a body and mind possessed.

This, as my American pals would say, is a 'no brainer.' You choose. A monosyllabic happy discombobulated child, or a child with the power of speech that is tormented? We're biased of course. We're used to the monosyllabic happy. We are terrified by the torture. It's all too true, there is no such thing as a free lunch.

The glimpse of the possibilities is intoxicating, but the price is far too high.

He writhes on the sofa with chattering teeth. His fingernails pinch, scratch and rake his skin. Small electric currents spasm through his entire body. Spittle collects on his taught lips as he clenches his teeth. His jaw jerks to one side and then the other. His hands flutter over his face open palmed. He is incapable of speech. As he grinds his teeth the vibrations reverberate through my rib cage. His fingers clench and unclench without a pattern. His entire body is a whiplash to turn over, a writhing eel, landed and floundering. He roams the surface area of the sofa like a cat circling for just the right spot. I am beneath him, hopeless, helpless and useless. My only purpose is the somewhat dubious benefit of my physical presence.

Too many neurons are firing at the same time. All we can do is ride out the electric storm and hope that we land safely, eventually.

His brother appears at our side, “what it is?”
“It's the pill dear. He's not feeling very well.” I hope my understatement curbs his qualms as he watches he big brother squirm.

He quotes, of course, from a Pokemon reference. The eerie accuracy gives me the shivers but it's none the less valid –

“I fink…….he is in psychic island.”

I think, that we have no choice but to dive in and start heading back to the mainland, sharpish.


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The anxious child

I read that book a couple of years ago to help mine for clues to assist my youngest son during a bout of OCD.

Now I need to find the book and re-read it, with a greater degree of care and a good deal more insight. I need new or different strategies.

Both my boys hate to leave the house. It has always been so. It’s not that they’re some type of exotic hot house orchids, they’re merely rooted to the spot.

When they were very small, I ran duplicate campaigns, as it was too complicated to do different things for different children. One size fits all was merely a survival mechanism. Every day, I would take them out to the driveway where the traditional American mailbox sits on the white picket fence. We would gather the mail as they tried to escape into the road, run into other gardens and generally create more ruckus and angst than any casual observer might guess.

Once inside again, we would read the recipients names and 'deliver' the letters to the office, the kitchen and any other person fortunate enough to receive mail.

Communication of any kind, has always been a struggle. PECS helped us when words were few and far between. Since they could both read, we used PECS that also had the written word beneath. Written instructions were usually more successful than oral verbal prompts. This is part explains why neither of them use the telephone, abhor the telephone. Once they went to school, this 'chore' fizzled out, as so many of my campaigns have. But they keep growing bigger, both the campaigns and the children.

…………..

My eldest son catapaults into the room in a state a great agitation. I lay down the book, “The Anxious Child,” open at page three.
“We made a deal so it's all gonna be o.k,” he announces breathlessly. I notice spouse reversing out of the driveway and speeding away.
“Great. I'm glad you sorted it out with Dad.”
“Oh no! I forgot the deal already!”
“Never mind. Dad will remember the deal. When he comes back we can ask him about it.”
“No, no, no. I need to know the deal now!” I give it my best shot, “well, when he comes home after his hair cut, he's going to take you to Target where you can choose a new prize.”
“Oh yes, that's right, I remember now. That's the deal.” He was unable to choose his prize. A reward from the teacher for a job well done, at the end of the first week of school on Friday. Now it is Saturday. We, his feeble minded parents, are unable to deal with the constant barrage of questions; 'how many days until next Friday? The next ‘prize’ day. How many minutes until next Friday, how many seconds until next Friday?'

“How long is he gonna be?”
“I don't know dear. Er, perhaps an hour. Let's play with the marbles until he gets home.”
“I don't like marbles, they're no fun. When's he gonna be home? I need to go and choose my prize?” I pick a number.
“He'll be here in 60 minutes, 360 seconds. Let's set the timer together.”
“That's gonna take forever!” he wails.

We try pokemon, trading cards, magnets and stories. Nothing distracts and engages him. We will not have 'electronics time' for another 8 and a half hours. His anxiety about the passage of time, supercedes all other concerns or interests. He stares at the timer, which I do not consider to be of any assistance. “It's not moving!” he wails. I look at the mountain of laundry that also seeks my attention, if anyone is able to go to bed tonight in clean linen.

The desperate clutch at straws, “I know, I'll telephone him as ask how long he's going to be!” The coward passes the buck. I check the number and start to dial. As my fingers stab the buttons, I formulate a cunning plan. “ I'll talk to Dad for a moment and then I'll tell him you want to ask him a question.” His eyes widen like saucers, “but I can't!”
“Yes you can, you're 8 now. Daddy would love to hear you talk to him on the phone.” So would a lot of other people, myself included. He has never spoken on the phone to anyway, not even a toy one.
“But it might be the wrong number!”
“If it's the wrong number, you can just say 'sorry, wrong number,' and put the receiver down. It's not a problem lovey.”
“But I would make a mistake.”
“We all makes mistakes. Little mistakes like that aren't important, nothing to worry about.”
“But it might be a bad man, a burgular, a thief. Someone might wanna steal me.”

I am so out of my depth. With a speech delay there was automatically a little time built into an exchange. This gave me the chance to think and strategize. For years I have been counting to fifteen, including 'ands', waiting for him to respond. Now, he's so far ahead of me that I'm trailing behind, if not drowning. The rings stop and reroute to our home answering machine! Typical. I replace the receiver. “What he say? When's he gonna be home?”
“I don't know dear he didn't pick up.” I rake my fingers through my hair and rack my brain. “Let's see, what shall we do until he comes home dear?”
“Hey! Look mum.” He points to the window and continues, “the mail man's here. How about we go and get the mail and sort it.”

5 years too late, is soon enough.

You can check out my other life over “here.”


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Chat, chat, chat – breaking News

 

From a few days ago………

Good parents don't typecast their children.

Good parents avoid labels such as 'Henry, our little athlete, Mary our little mother, Poppy our little jokester.'

There are so many reasons why it is a mistake to label our children. Once they've been cast, they often strive to meet those expectations. Even when they are mis-labeled, the effect can still be profound. Parents can miss a whole slew of information because they're not looking for it. If the 'mother' child makes a joke, the parent fails to notice, because that isn't the jokey child. If the jokey child runs a four minute mile, no-one notices. We see what we expect to see, we miss anything and everything that doesn't fit into our preconceived perspective. Or maybe that's just me?

“I'll make an appointment as soon as they're open dear.”
“Now?”
“No at 9:00, they open at nine.”
“What time is it now?”
“Er….7:21,” I scurry after him like a jogging buddy even though I am terminally allergic to any form of exercise.
“How many minutes?”
“Er…….99.”
“How many seconds?”
“Er…………………..five hundred……five hundred and forty, I think?”
“I will have a different pill?” He has lost the 'non-verbal' part of his label. I have lost my marbles.
“Maybe, or perhaps a smaller one. Do you remember the doctor showed you the three sizes of pills”
“Yes. It is the pill that gives me the headache?”
“Yes I think so.”

As we chat, he moves. My slow lugubrious, laborious, lethargic 8 year old marches swiftly around the house and I follow in his wake. When I say ‘march,’ I mean exactly that. Instead of walking on his tippy, tippy toes, digits splayed, he has his heels on the ground, a rare and quite startling alteration, but only one of so many. His hands touch the furniture in time to the band of his feet, but his head flicks towards me at regular intervals.
“As you were saying….” he says, which nearly makes me trip over my own feet.
“I was? What was I saying?”
“You were saying about tummy aches.”
“I was?”
“Yes. You said that they weren't as bad as headaches.” Where has my recall gone?
“Ah yes. Well I don't really know, but I think that headaches are so bad that you can't do anything, just lie down in bed, but with tummy aches you can keep going.” However, I'm not really sure that I can keep going? It is only 7:22 in the morning. The pill has been in his system 40 minutes and I am already completely out of my depth, trotting behind my son, trying to catch every word. I am so muddled and befuddled.

I have been told that most people are already set in their ways by their early 30’s rather than their 40’s. We become incapable of adopting a major change. At best, we can hope to alter less than 5% of our character, behaviour and opinions. Imagine that! A titchy little 5%. The only caveat to this research is where a person has a life altering catastrophe, such a near death experience. Those individuals cast off the shackles of the past and are reborn. I had accepted this fact as truth. The idiom ‘old stick in the mud,’ could have been tattooed on my forehead, but now, evidence to the contrary blasts me on a daily basis.

“Wait up! I'll be right back.” He lifts a hand in a parting farewell gesture as his body shifts into super fast gear and whizzes out of the kitchen. I scramble after him, through the galley, past the utility room, into the garage, out of the door, down the path I scamper after the galloping, sneaker covered, feet of my son.

This isn't my runner. This isn't my Houdini, the energizer bunny that spins into the path of oncoming traffic. This is my dormouse, the sleepy, gentle child curled in a teapot.

This is the wrong son doing the wrong thing. I hear the traffic and see my shambolic boy, as he widens the gap between us. I run. I see the traffic. I run faster. I hear the hoot, the blare of a horn. I fly, dressing gown gaping to rugby tackle him to the ground.

It only seems a few seconds ago that I was too scared to correct his speech, fearful that the few words that he spoke voluntarily, would dry up. This is all so new, relatively. I've been reluctant to risk correction, short of rephrasing and repeating the right version. Far to scared to extinguish the spark.

“What are you doing mum?” he asks slightly dazed, sprawled on the concrete.
I squeeze him tight and run an eye over him to see how much damage I've caused.
“It's o.k. mum, I'm not hurt, er hurted, I mean hurt, I was right the first time!”
“Oh.”
“What is it, what's wrong, why are you crying? I only went to get the newspaper for you! Here, it's got a great picture on the front!”

Post script – please do not rush out to your paediatrician based on this post. There is a huge downside that I’ve not had a chance to compose, other than the OCD. There is no such thing as a free lunch.


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The Ancient Mariner

 

Where is my compass when I need it?

Or should that rather be a sexton? Or a map?

But I have learned one new thing; anxiety is contagious, or should that be infectious?

My older son's obsession with the passage of time has grown to gargantuan proportions. I am unable to field his constant question, 'how long until electronics?' Nothing distracts him from the passing seconds displayed on the timer. He carries it around with him and glances at the figures with every breath. I'm not sure if I'm anxious or just plain ratty at the harassment, but I do know that it's not healthy for either of us.

We will both be arithmetical athletes if he keeps up at this rate. There are insufficient seconds between the seconds, for me to give any attention to my other children and responsibilities. It is only possible to read a couple of words or part of a line about “Your Anxious Child,” which means that I am no closer to finding an appropriate coping strategy for any of us. “It's taking too long” he wails, interspersed with “how many minutes until electronics? No, no, no, I mean how many seconds?” He will wear out his vocal chords if he keeps twanging them in the manner. They're not used to such exercise.

I am in the midst of circular thought patterns myself, when it dawns on me that another cause of concern is that he has also failed to play with his electronics for the last few days. When the designated time, 5:30 p.m. finally arrives, instead of pounding off to grab one of the coveted toys, he ambles around listlessly. After we've started our bedtime routine after supper, it occurs to him that he has missed 'electronics' time again. I am uncertain how this turn of events has come about?

If we spend another 24 hours like this, I might as well book my spot in a padded cell. There again, that might give me a few minutes to read, learn, strategize and come up with some kind of new campaign, no matter how inadequate it eventually turns out to be. How can he have so many words and yet I have none, or at least not the right ones?

As the timer starts beeping he dashes to my side to wave it around in a storm of ecstasy, “it's 5:30, it's electronics time, at last! I thought it would never come! I'm so glad that's all over with.” He deflates into the sofa with a sigh. “Now I can relax, that's so much better.”

His fingers turn the pages of one of the manuals to one of his games, as he studies the pictures and instructions.

“Um…..aren’t you going to play with your…Gameboy…..or something?” I offer tentatively now that he appears to be at peace.
“Nah!…..whatever,” he adds with all the charm of a teenager. Whatever! Whatever? Don’t you ‘whatever’ me matey! We have endured an entire day, second by second, and now all we have is ‘whatever!’ I am unfamiliar with ‘young people speak,’ but even I know that this roughly translates to ‘it is a trifle of no consequence.’ Where is all this ‘young people speak’ coming from? ‘A trifle of no consequence’ does not match today’s experience. I am completely mystified, a condition which I believe is rapidly becoming my new status.

Much later, when I tuck him into bed at eight, he realizes that another 24 hours has passed, during which time he has failed to play any electronics.

We have turned into a family of rampant, racing radicals, not the free kind.

Pass me the monkey nuts, I need to re-energize before I fall off my wheel.


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Where on the chair? Right there!

I stumble into the kitchen early in the morning and trip on a crayon.  It is the soft fall of the not truly awake enough to hurt oneself, variety.  I feel around for my dislodged glasses in a state of temporary blindness and befuddlement.  I should have large neon glasses to aid me, instead of the apparently invisible pair that I invested in.  I notice the unusually dirty skirting boards.  I look more closely.  My nose is about to scrape the wood when I dart back in shock.  A mouse hole!

I scrabble around on the floor checking my skirting boards.  There are so many!  We've been invaded by an army of mice,  an infestation no less.  I grab a wooden spoon and poke tentatively at the hole.  How strange?  The hole isn't a hole at all, it's solid.  I touch the hole with my finger tip.  Definitely solid.  I look closely at the little grey archway, a cartoon mouse hole, or rather, many, many cartoon mouse holes.  I step on my glasses.  Well they were wonky anyway.  I arrange my glasses and go for a closer inspection.  There is also a small grey toilet cartoon, mouse sized, as well as a lamp.  The lamp is the clincher, I know which nocturnal child to blame.  I start scrubbing my skirting boards in-between gulps of tepid coffee.  Washable markers indeed!  What a nerve!

Within half an hour I have eliminated half of the invaders and the kitchen stinks of bleach.   My eldest son appears, he is in a dither, “hey mom something's freakin me out, kinda.”
“What is it dear.”
“Er, come wiv me.”  He leads me by the hand to his sister's bedroom.  She lies sprawled on the bed, still wearing her dressing up outfit.  “It's just dress up dear, nothing to worry about.”
“I know but it's kinda scary, er is she a witch or something?”  We look at the black curly wings protruding from her back.  “I think it's some kind of fairy outfit.”
“I know but it's kinda freaky when it's not Halloween.”  This is no longer a two and a half speech delay for my eight year old, it's something else entirely.  We leave her to slumber and trot back downstairs.  Our steps stir the little one who comes skittering down after us like a can on a string tied to a car’s bumper.

In the kitchen both are horrified but for multifarious and different reasons.  The artist is incensed at the destruction but unable to articulate his outrage as he pinches his nostrils.   Bleach.  The other one recognizes that we are under siege.
“I do not like mouses!”
“There are no mice dear, really, these are just pretend mouse holes.  See!   I can wash them off.”  I scrub to demonstrate, but they're hard work to remove.
“No.  I don't see.  Where are the mouses?”
“Mice dear.  There aren't any.”
“Where are the mouses?  They are in the houses, er, the house, er home, er here?”  His little brother picks up on the rhyme, guffaws with laughter and spins off chanting “mouses, in the house es, mouses, in the house es, mouses, in the house es.”  I foresee the day ahead of me.
“There aren't any mice in here and anyway, even if a mouse came in, we have two brave cats to protect us.”
He looks at me dubiously as I continue to scrub and push my wonky glasses back up my nose.
“But we had a mouse before, one time.”
“Good remembering.  Yes, you're right we did have a mouse but that was over two years ago.”  Fancy him remembering that?   Fancy him telling me about it!  His little brother spins back into the picture, “you must leave them, dey are dah jolly good joke dat is funny.”
“Really!”  I would like to point out that at this moment he is in the minority.
“Yes!  Dah mouse come in, he run at dah hole and go boink on his head, fall down.”  He is delighted at his wit.  I am less so.
“The mouse come in?” squeaks his brother.
“No dear.  A mouse hasn't come in, it's a joke, his joke.”  A bad joke.  We are in the midst of this cycle when spouse appears to see what all the commotion is about.  After a couple of repetitive cycles he's up to speed and in the loop.
“Oh well you don't have to worry about that.  We have two cats remember?”
“Mum is already said that.”  Good grief is this the same child?
“Good, so we're all on the same page then.  So really the only reason we had a mouse in the first place was because Jasper caught him and brought him inside for you as a present!”
“Jasper!  My old cat?”
“Yes.  Do you remember him?”
“Jasper bringed the mouse into the house!”
“Yes.”
“But mum said that cats stop mouses coming into the houses, er house!”
“Well yes, that is true but………”  He runs away screaming.

We debate how to proceed.
“I didn't know he was afraid of mice?”
“He isn't, or rather he wasn't, but he certainly is now.” The volume of screaming subsides.
“I wonder if he's always been afraid of them but never been able to tell us before?”
“Maybe?”  I'm uncertain if he's stopped screaming or is just so far away now that I can no longer hear him.
“Maybe the price of speech is more OCD?”
“What a trade off!”  I think of the many years I have spent moaning about how different they are.
“I wonder if there's a modern day equivalent of the Pied Piper of Hamlin?”
“I assume you only want to get rid of the virtual imaginary mice?”
“Well he's always had a thing about bears.”
“And faces.”
“What percentage of his inexplicable meltdowns were caused by fear  about something or other, but he wasn't able to tell us do you suppose?”  I hear another blood curling scream and the thunder of size two feet charging towards us.  On arrival he leaps into my arms, wraps his legs around my waist and clutches my neck, “it's freaking me out man! There is a huge spider in dere!”  The adults exchange glances as we collectively feel the floorboards reverberate.  He clutches me tighter, a stranglehold as I carry him to the front door.  Outside I point across the road, “it's just a jack hammer dear, they're digging up their driveway.”  I wonder how long it takes to dig up a drive way as I carry my quaking son back inside?  “They're, they're gonna dig up our house too?” he gasps.
“No dear, there's nothing to worry about.”  I squeeze him tighter as the 'no carrying under any circumstances' campaign dies again.
“They are strangers?  How can we tell if they're bad guys?”
“Um..”
“Do you think they are…. burglars?  Are they gonna come and steal me?”  I see tears welling up in his eyes as he nibbles the edge of the band aid on his finger.  I notice that I am trembling too!  Probably just insufficient caffeine intake?

Help!


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Blink of an eye – Tuesday supplemental

Not so long back, they started Pre-school and such like. Their exposure was staggered. 30 minutes for the first day. Internment with constant screaming. The time was gradually increased until a whole morning of three and a half hours was achieved.

Now as they start 4th, 3rd and 2nd grade, I rather think that this would be a good approach again. It seems grossly unfair that they should be expected to spend a whole day in school, 6 hours and 25 minutes. Draconian. They should be allowed to gently ease into the new school year by small increments, after weeks of idleness. It's not that I won't enjoy my child free hours, it's more a question of sharing. Recently, my eldest son has been talking prodigiously, for a whole 4 days in fact. This means that for the many other days in the long summer holiday, he wasn't. I need to rewind the summer holidays to the beginning, so I can have the benefit of all those missed talking days. Why should the school get them instead? Maybe I could rewind to when he was two and a half, a re-run? Then it was that all the lovely little baby words started to fade and fizzled out like a damp squib.

I have no evidence in support, but after 8 years, I know that the school squanders his word bank during the day and then returns my son to me, silent. I am not a good sharer. I content myself with the knowledge that the first fortnight consists of two four day weeks.

I focus on the label of the liquid multivitamins, give up and take a glug to wash down a couple of Ibrupofen.

I pick up the abandoned play things, the toilet brush, screw driver, curtain pull and magic wand. I look across at the bank of idle timers on the table that have no-one to sequence, coax and calm. I need a complete rest. Six hours and 25 minutes.

Instead I commit myself to hard labour in the garden because my cherry tomatoes have a personality disorder. They've invaded the Honeysuckle . I need to prune their ambitions as they dangle over the 10 foot fence. Maybe? I dither. I decide to conduct a scientifically, controlled experiment. How long does it take to turn your body into a pickled walnut? Bath or shower? I pick up the timer, the egg one. I set it for two hours and 15 minutes. I don't want to forget that appointment at the manicurist. I turn the timer on and my brain off.


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Classic extra

If you had to sum up your child in a few sentences, how would you do it?  Why would you want to anyway?

I want to.  I need to clarify but not diminish.

If you met my son you’d know that there was something different about him, even before he spoke, if he spoke at all.  Maybe you’d think he was a  bit of a klutz.  He certainly looks lethargic.  He doesn’t have much to say for himself, but he’s well liked.  He is a kind and sensitive child, tentative and definitely an indoor type.  He sleeps like an angel nearly every night.  His primary interest at the moment happens to be Pokemon.  Should I mention that we love him dearly as all parents do?

We take the first tentative step after 8 years and visit the psychiatrist for another evaluation of my highly atypical autistic son.  The prescription is exorbitant.

Within 45 minutes, the son we are familiar with, is invaded by an interloper.  We panic, dither and fret.  Who is this child?  Where is our son?  We have no idea who this boy is?

There is nothing to be done.  We have to wait for it to wear off.  We know that no permanent damage will be done and it will be out of his system within 24 hours.  We have another quick panic or two before we give up and decide to get to know the visitor a little better, before he disappears again.

We sit in the garden at the table.  The other two children have finished their breakfast and disappeared inside to watch telly, while we watch our other son.  We ignore the other two.  They may have to watch telly all day, whilst we concentrate on this one.  We watch the stranger who picks at his croissant as he has no appetite at all.  I find a bottle of chocolate Ensure to tempt him, but his interest in stealing those bottles and drinking the contents, has also been stolen.

My semi silent son has been replaced with someone who talks incessantly.  His voice is so quiet we can hardly hear him, but he is so animated that we strain to catch every delightful syllable.  Instead of 95% Pokemon treatises, he taunts us with social chit chat.  The old pal that he met up with at Summer school, what he likes, what he doesn’t.  Every so often, he will pause, shake his head to mutter, “this is just a crazy day,”  or  “what a crazy day,” or  “this is such a crazy day.”  Each time it’s more or less the same words, but each time there is a different emphasis, it is not scripting nor echolalia.  We chat to our chatty son, baffled.

He is unable to swim because of the stitches in his finger.  Two children swim whilst he sits at my side.  He knows that swimming daily is a healthy form of exercise.  He jumps up to announce, “if I can’t swim I’ll do my jogging instead,” and trots of to run three circuits around the pool without falling over or bumping into anything.  I have never known him run anywhere voluntarily and certainly not without prompting and encouragement.

He is interrupted from his exercise by a bee.  He returns to my side to sit.  He sits for 45 minutes, outside the house, by my side without pummeling me for his deep proprioceptive input.  Instead I watch his feet work.  His legs circle at the knee.  They slip the flip flops on, and then off again.  He does this continuously for 45 minutes.  In-between whiles his toes clench and unclench, each digit in turn like an arpeggio on the piano keys.   Most days I cannot get him to put on a pair of shoes at all.  Putting on a pair of sandals usually takes between 5 and 15 minutes for two shoes.  I am uncertain whether to laugh or cry.

His body riles, a pit of  snakes that roil and writhe.  He is in a state of perpetual motion, unprecedented.  His huge eyes are wide open in an expression of interest and surprise.  He grinds his teeth as his face registers change like the riffle of  a well shuffled deck of cards.  His mouth tic is the worst it has ever been and the dribble is unmistakable.  Inside the house he walks with stiff legs, around and around and around, a bear without a cage.  His shoulders are high, so that he has no neck, head set at angle whilst his face is that of an expert gurner.  Both arms are crooked and locked, one bent at the elbow to display a branch of twig fingers.   He continues to chat.  I am terrified and ecstatic.

He runs about the house with a purpose.  He has several different purposes throughout the day.  One purpose doesn’t encroach upon another.  He manages each one separately without distractions, interference or interruptions.  I have no idea what is happening in his head, I can only see what is happening to his body and guess.

When bed time arrives at 8, he is still wired.  We allow his siblings to slumber.  Downstairs during the night time, is a distressing time.  He does not understand why he cannot sleep.  We discuss the matter with him because we can, discuss, that is to say.  We read books and cuddle the boy who is no longer an interloper but a fine new friend.

Eventually, just after two in the morning, he falls asleep.

Cheer up, it’s a small price to pay, in “theory.”

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