Delacato - My Mother's Heart

To be completed

Carl Delacato really changed the face of autism in the 70’s.

I had read his book The Ultimate Stranger and contacted the organisation after I had finished with the neurological programme – due to Skye’s descent into autism over arching any volunteers and programme – we had a ‘mad kid’ on our hands now.

Basically, Delacato postulated that we had five sense – and there was a mess in the wiring, so many or some or all of these could be any combination of hyperactivity (over activity), hypoactivity (lack of functionality) and ‘white noise’.

To learn more . .. http://nacd.org/journal/autismspectrum.php

Below is what I write out as where I saw Skye/Kathyrn at age 4 1/2.

Progress report at age 4 1/2

Diagnosis

Massive brain damage and cortical calcification from in utero toxoplasmotic infection.
Doman style programme from 3-16 months of age. Full Doman programme from Max Britt in Healesville, Aust from 16-27 months.
As a baby, after being in a coma, she went from an insensate blob to a hyperactive totally withdrawn terrified insomniac. Since being off programme intensive, she’s finally become a happy, healthy sometimes very affectionate child, who can deal with the world in her terms only – it doesn’t make sense to her on our terms.

Visual

Can see enough to function. Sometimes squints into the distance, and in the sunlight if wanting to ‘see’ something she’ll put it 1-2 inches from her R eye and tilt her head, to focus.
Often blanks out and stares at nothing, or up into space.
Can move her eyes to cross-eyed and then laughs strangely, and gets hyperactive and silly.
Focuses on her fingers very close to her eyes, if wanting to blank us out. Turns her head the other way if intelligence cards, reading etc. are tried.
Appears not to see objects unless they’re moving or making a noise, and yet can pick up tiny pieces of fluff etc. off surfaces.
Eyes still not straight – the amount of turn varies according to how she is; isn’t very noticeable though.

Auditory

Makes heaps of noise, and responds with great enthusiasm to noise – often laughing inappropriately to very loud cracks and crashes. Bangs surfaces together all the time. Shrieks and screams.
Sometimes puts R hand over ear, and plays with listening to sounds by moving it about.
Has started to yell in objection at loud discordant music and sounds and gets annoyed if loud yelling about her.
Seems to ignore people yelling in her ear in response to her noise. Acts as though she’s deaf at times.
Can hear very small noises and if she’s in the mood when we whisper in her ear, she pays attention.
Sometimes stops and listens to music and birdsong.

Tactile

Doesn’t appear to feel pain properly, and if she does, it’s a delayed message often laughs, when something ‘should’ hurt.
Is ticklish.
Can locate and remove tiny bits of food around her mouth.
Can locate itching bites on back. Rubs areas when they hurt.
Hits her head with her fists in frustration, if told off.
Now it’s hot, she exposes her tummy to any flat surface to cool down.

Mouth

Is less likely to put everything in mouth – mostly everything goes up to it and her lips explore in a kissing fashion.
Has eaten cigarette butts, dog pooh and glass in the past. And soap and dead cockroaches.
Consistency is a problem – taste isn’t. Tiny little lumps get rejected. It’s as though her mouth can’t feel it in certain areas, and she’ll spit food out and I can spoon it back in, in the right place in her mouth, it’s accepted.
She chews skinned apples and swallows, but carrot is chewed and spat out.
Started drinking from a cup, but usually puts her tongue in as well.
Has tongue thrust if we feed her and not if she feeds herself.

Mobility

Walks and runs in cross pattern. Holds herself and moves in a well-co-ordinated way, has good balance – esp. better since we’ve been doing 4-6 cross patterns a day and 500m creeping daily. Sometimes appears to favour the left leg which is slightly wasted. When standing, feet are straight, but often are 45 degrees turning inwards when moving.
Doesn’t stumble since back on some programme activities, climbs well. No fear of falling or heights, but knows the visual limits eg trampoline – very keen on bouncing and does it now interacting with people she used to jump all day in her own world – has bounced since she could stand – at 6 months. Often bounces on toes, but walks on all of sole. Can run very quickly.
Gets silly easily and we have to be careful on stairs as she thinks she can do anything. Creeps well – used to do 2km daily.

Manual

Like everything measurable, seems to have gone backwards off Doman programme. Used to have good bimanual cortical opposition. Watching her use her hands – it’s as though they’re ‘asleep’ and they just don’t work properly or fast enough – she seems to get frustrated very easily. Just started to stack blocks – she’s watching what her hands do now. Can’t show her something to imitate – it’s as though she’s in a tunnel and everything is very rigid – except playing – alone again – rough and tumble and tickle can now happen as she’s not freaked out, but it’s on her terms.

Speech

She often looks as though she thinks she’s speaking. There are intonation and punctuation noises, she looks in our eyes and waits for an answer.
Can whistle and hum (doesn’t copy us) once copied and spoke ‘nice’ perfectly. Once said ‘ome’ while picking up her bag and starting to walk home.
Has a constant noise for ‘yes’ and a few other things. Now uses her voice to make noises when she wants something.
A lot of the day she runs sounds together (I think this is her approximation of the beeper sound that has been her constant companion on programme – for masks and patterns ‘ninganinganinganinganinganinganinganinga’ in same pitch and tone as the beeper. Yells at us if she’s telling us off. We can have conversations with her, but don’t really know what she’s saying, but she knows she’s talking with us.

The two years of doing programme were very necessary. When my husband left, the other 2 kids (13 and 5) and I then had lots of survival issues. If Kathryn had not started screaming in terror all night till 3-4 am, I would have probably had the energy to continue. However it seemed as though doing programme had got her to a point where she was saturated with information and she was totally terror struck a lot of the time, and was not in our world. We couldn’t reach her either.

She is now more human, calmer and trusts people and will sleep.