On Hopeful Parents : Talking about Splinter Skills

Last month on Hopeful Parents I had talked about how much I dislike the term “Splinter Skill”

Subsequently, a few of my good friends and I had a thoughtful discussion about the term

What If the “skill” was surrounded by problem?

Example, a child had musical ability – however his sensory system was so oversensitive that he is unable to play on demand

In cases such as this, would we still consider the term to be demeaning ?

Second, what if the skill was a useless one?

I see the points

But I disagreed

My objections are many and I talk about them on Hopeful parents here today if you  have a minute, do visit the website

If you dont here is why I don't use the term

First, we never use the term for anyone but children with special needs.

Only in Auties, do we calculate the net present value of a skill .

Never in typically developing children

Consider the ability to spell.

In the days of computers and spell checks – an unusual ability to spell can be seen as having limited value

No?

But we deify this ability.

An entire cloud of popular culture exists around the spelling bee.

It makes no sense that watching a child spell a word can actually be a spectator sport.

But it is and we do.

However when an autistic child has a special ability such as guessing the day of any date, a photographic memory etc – we shrug our shoulders and call it a useless “party trick” - a splinter skill

Consider sports.

Parents of neurotypical kids do not sigh and say “ she/he will probably have a desk job someday? Why bother?”

No!.

Instead, they call themselves soccer moms and dads. They complain about their busy schedules ( but you know they are actually feeling proud )

These parents see something instinctively, that eludes us parents of special needs kids.

They see that just the act of winning at something- anything , being in the limelight for even a little while , being praised and feeling competent.

These things are supremely nourishing

These act lead to a blossoming  of your child’s spirit .

Second – when we don’t allow auties to have this feeling of competence, we are depriving those children that need this nourishment most .

While all children need self esteem, kids with special needs have a much harder road in some ways and so need it most .

When our children face the obstacles that life brings then , when they see themselves through the eyes of others as weird, when the world seems cruel and uncaring – then the voice that comes from inside that tells them that they are good, competent, successful, smart and beautiful may be the only butress they have

The third reason I get on my soapbox about this term, is because it is part of the emotional  climate of raising kids of special needs.

Everything is seen in the light of deficiency, part of a syndrome.

Fourth, this attitude if is part of our parenting perspective, will inevitably compromise our joy .

For isn’t taking pride in your child, one of the primary rewards of child rearing

And so when DH and I notice that R is saying the numbers – backwards and in different foreign languages – we exchange glances of pride

( No we are not moving to these foreign countries and its certainly doubtful whether our ability to count in their language would prove to be of any use if we did go there !)

We beam with pleasure and sashay it as our status on Facebook.

We accept with alacrity all the lovely compliments that our good friends give us and think about the wonderful treasure we have

And we are a little more happier than we were a while ago

We cannot control much in our lives

But we can control the words we use and the way we see things

And so, this is why I will never use the word splinter skill

I will see it as a gift and I will be thankful for it

The week of Thanksgiving

Thursday

We buy a big Christmas Tree at Walmart - its fake as can be with it but can I just say R is UNBELIEVABLY excited by it  and the wreath

 

We go to the Christmas inn for lunch - but all they are serving is the Thanksgiving menu and the only things that R eats when we go out are chicken tenders and pizza - so we have to leave and eat at the ubiquitous McDonald's

R does not care as the Christmas Inn is decorated with all sorts of Christmas paraphernalia and this is enough for him to think of the visit as a Grand Success

In the Mc Donalds there are a bunch of very noisy attention seeking neurotypical kids and DH says that he does not think he could be a SAHD if R was neurotypical - but I argue back that NT or Autie - R would still be a lot like us - quiet, bookish, gentle( kind of like he is now - just talkative and unstimmy )

In fact when we ask him what he wants for Christmas -  turns out that all he wants is a Christmas tree
 ( its one of his most delightful aspects- this lack of coveting. I have learned from him to question why I want what I want instead of simply thinking about how I should get it )

We spend the evening decorating it with shiny ( gaudy ) ornaments and with jingle bells

This is to be the last warm day of the year and R and I make full use of it by lying in our hammock swing on the porch, exchange compliments and watch the stars come out

Friday

I have been very la di da about the Black Friday Sales - informing DH loftily that material things dont do it for me any more

But something happens to me in Coldwater Creek and I transform from this buddhist type person - into a person that coos over suede and rubs her cheek over chiffon

I acquire so many clothes that at one point I have to ask DH to carry my pile of  shame clothes as its too heavy for me

DH teases me tremendously while I do a fashion show back at the cabin

And I am forced to admit that I am not a seeker of materialistic things in general but specifically speaking clothes make me happy

Saturday

R who is always mad for the new cabin new house - surprises us by asking to go home!

As DH and I are all rested and are itching to do some work around the house- so we agree with alacrity  - ( I am perishing to sort recycling and clear up our back porch where an alarming large amount of recycling has collected  and DH with yardwork )

One of the best things about blogging for me is to look at what we were doing this time last year

Looking back at last year I noticed that we used to spend a lot more time outside

Sometime this year, that changed

And so my resolution is to get back to an active physical routine

R and I are both creatures of intertia  - ie we usually do what we usually do - but when we get into good routines this really works in our advantage

So while I have to force R to get to the trampoline to jump - he enjoys himself so much- playing with the leaves , creating leaf-rain and jumping - that I also have to force him to come back home




We sing Ring Around the roses and fall down with great crashes





Sunday

I cook all morning , we jump and play all afternoon and DH and I do a great pile of laundry in the evening


Monday
All his therapies are cancelled today and so we loll about in the evening.

DH and I watch Lie to me lazily

I had decided that I would take a walk - no matter what today and though its bleak and already dark at 6 - I go out .

I am so refreshed by the walk that I take R out for a jump on the trampoline.
We have a blast even though a soft rain has started to fall .
while I love good weather - I sometimes love it even more when the weather sucks and we stick our thumbs at it and have a great time anyway

R has been dragging a whole bunch of groceries ( plastic pretend groceries ) with his tiny shopping cart and we have a lot of fun with these

I pretend to Baby Tad and Potatohead Santa want to eat and R feeds them various things

Today he says something funny.

He had been holding it in for a while and after he goes to the bathroom he says " I feel much better now "

I think he picked up the line from one of his social stories but I am thrilled !

LOL
This is one blog post I must definitely erase before R gets to the age of reading this blog

Tuesday

We go to the dentist for the FIRST TIME EVER

I am HORRIBLY stressed about this

R hates all doctor visits and weeps in a piteous fashion. We comfort him in our own ways

Me through Distraction,  DH by teasing him about being a wimp and a cry baby and the dental assistant by giving him a balloon ( she is the most effective )



I am scared he will have loads of cavities owing to all the Junior mints in his ABA and the Sprite that is regularly mixed with water for him

But he has only one .

The dentist says we could repair it or just wait for it to fall out by itself

I tell a surprised Dentist that I love him for ever and ever and we are on our way, much relieved

Wednesday

DH and I go for our date lunch in Apple Bees

I am feeling shockingly indulgent and we share their "Maple Butter Blondie "

DH keeps telling me that I am "eating nothing" and should "eat more"

But when I discover with a squeak of dismay that it has a 1000 calories in it - he tells me that in his estimation, I ate 4/5th of it ( i did not !!!)

Men!!!

I want to go for a walk in the evening and R discourages me and says I should jump with him in the trampoline

We jump and jump and jump for an hour  till we are sweating even though its freezing cold

Then we lie in the trampoline.

In the half light of the moon and the street lamps,   the trees have turned to silver

I and R gaze at the skies watching the stars come out

It looks like there are always Christmas lights in the sky

I say "starry night"

And he says " silent night .. holy night "

The last days of Fall

My favorite season draws to a close

The woods are spectacular this time of the year

But its all so transitory

Even as I wake up to this view from my bedroom window and wonder




Was there ever a forest so gold ?

Was there ever a sky so blue?



Even as I am within - enveloped on all sides -with this great beauty I am full of melancholy

As I know that this will pass soon enough

This really is my existential crisis .

I was talking with a few of my close friends the other day and we were talking about what our existential crises were

I was astonished to find that for most of us the fear is that this is it.

That nothing new-  no change is about to come

I, on the other, hand worry about the things that will change

For the present   - though daily worries may be plenty - is really as good as it gets

My family is well and happy and loving

I am much beloved by my husband and son

R - even though he has many challenges - is essentially a very happy child.

And for now we are able to manage most of his sorrows

I love the present

My existential crisis therefore, is the opposite

I worry that things will change

I go for a walk greedily storing up the forest in my mind. I know the next weekend when we  return to the cabin  the trees will be bare



Oh how I wish I could make time stop

As I walk in the trees - I think about the lessons there are in the seasons

How there is a time for everything

And how all things must pass

I sigh heavily and turn towards home

R is waiting on the steps.

He is playing with his Little People Santa toys

He lifts his arms to be picked up

"Santa Claus is coming to town" he whispers breathlessly in my hair

For he is looking to Christmas with an eagerness that is infectious

And I think that this second lesson is even more important than the first one

To find and enjoy the beauty in our present is a good thing

To aceept that this beauty must pass is  important

But to know,  that there is beauty is every season

( For aren't the weary winters full of some of my favorite things too Christmas fun , vacation , snow, fireplaces,  crisp evenings, cuddles, scarves, soup, tea, cocoa, movies and Schnapps  )

That every season and every time comes with its own promise, if we look for it

That is the real lesson that the passing of seasons teaches us

"What the caterpillar calls the end of the world, the master calls a butterfly."
- Richard Bach

A birthday party, a trip to California and etc

A trip  to California

I had a conference coming up

And since DH and R have not seen California ever - we all decided to go along together

One of my good friends from Grad School lives there and we decided to meet up and see the San Diego Zoo

The weather was just perfect and my friend and her daughter were so much fun and the zoo was great

There are amazing animals at this zoo

I had no idea Orangutans were this big ( see behind us )


But R was all whine and cling


All he wants to do is go back to the hotel . Plus he has woken up really really early.( 3.30 am ) because of the time difference between the coasts

He is finally happy when he saw something familiar in the zoo gift shop -
A Santa display !!!


DH and I plough through things like this  discomfort though - new experiences are very very important for Auties and its critical not to to get stuck( trapped )  in our comfort zone

I repeated Temple Grandin's words in my head  - "keep increasing the web pages.. since autie brains can work like google images .. the more web pages there are the more they will have to work off of "

We are staying right next to the fabulous Gas Lamp district and the first day he does not want to take a walk at all


He loves hotels ( the whole idea that there are the same chains in every place is a great comfort to him and he will spell out Hilton and Residence Inn or Embassy Suites with great glee everytime we go to one of these )
 


Above he is in the pool which he loves.

He copes with the strangeness of new places - by finding patterns of sameness- as in he will only want to go to the pool or go to restaurants ( especially if they are chains that we always go to like the ubiquitous Mc Donalds )

But we firmly ( but kindly ) insist he go the first day

The remaining three days however he goes with aplomb and we have a great time - which is a great reminder that one must not give up - if things dont turn out well the first time with an autie. Its a sure way to limit ones world
( Think about it - example, if you think taking walks dont work - and try something else  - you have misssed the point . The child is not  really responding negatively to the activity but to the newness of it- and everything will be new if you try only once or twice. Consequently you will think "nothing works" and give up trying. This is something I learned from DH - as I am quick to give up   )

We do word hunts .

( In school they are doing T , I and P this week and so we do word hunts of these letters .( T and P are really easy - trash, table, train , tracks, etc or Parking , pedestrian etc , But "I" is hard and if we had not spotted an Indian restaurant and had  a beverage with ice in it - we would have been stumped )

His birthday is on Tuesday

Last year was the first time he had even shown the remotest of interest in a birthday and we have mistakenly assumed that we can just have a simple birthday party and he will be fine

To some extent he is -

We buy him a whole bunch of junk presents we know he will love like-  letters numbers, magnetic words etc

he lolls about reading his card,  most interested

He loves his  bag of tresasures .

We go to the hard Rock Cafe and have a little party for him


But suddenly in the evening he bursts into tears and says "Birthday party surprise"

And so we remember that last year we had done a little party in school and realise that he must be worried that he will have no birthday party

We promise a birthday party when we get back and collude with his wonderful class teacher ( no social request is every ignored . In fact R asks for so little - we usually do whatever he asks for as long as its not harmful )

The party

DH is simply an artistic genius  and cuts up the cake in the shape of a letter 6 and decorates it with his amazing cream cheese icing . DH is one of those cooks in whose hands  everything tastes beter and the cake is amazing

I tell the teachers not to send any home( for I am a fool for cream cheese )

R is thrilled when we arrive in school with all the paraphrenelia of his "Little People" Birthday set that he has been pretend playing with these past few days - balloons, birthday hats, themed paper plates etc .

It is a GRAND party


A small kerfuffle breaks down over who can have all the balloons but firtunately we have come prepared with loads of extras and all sorrows are appeased quickly

Etc
One of the saddest things last month is that a couple we are very very close to are breaking up. We are having a very very hard time dealing with this as we love them both very much and they had a great marriage.

Sometimes I think that one of the most important things to remember about marriage is just how fragile it can be and how one has to keep working at it

People can never stop becoming a mother or a father no matter what their child does but people  can always stop being a husband or a wife.

The woods around our cabin are stunning this time of the year ..I go for solitary walks and eat up all the color
I look at the trees the way R has taught me to - up not at

So they are framed against the sky. Truly the greatest artist- the one with the most vivid imagination -  is nature



I find great peace in the woods and the sound of the wind

Its as though the trees are saying.

Slow down - why do you worry so much ?

What's with all the rush ?

 Do you know how many people have walked these woods thinking how important and big their worries were? Do you know how wrong they were? Stay in the here and now. Dont worry about things that you have no control over.

And I return renewed 

Building a life around Strength

Here is a reposting of the Hopeful Parents post I wrote on Friday - so I can have all my posts in one place and I know some of you find it tiresome to be asked to  go to links

Do you remember the subject that you were worst at in School?

The one you dreaded

For me, it was Chemistry

When High school ended, it was such a relief to know that never again would I encounter Chemistry

I could move on to the things I was good at 

Things I enjoyed

When I chose my career – I chose a career where my strengths were myadvantage

And so, even though , I am not  a person of great gifts or any brilliance

 I play from my strength and I do pretty okay

However there are people who will be evaluated on their weaknesses all their lives

These are our auties

They are continually evaluated on verbal strength – frequently their great weaknesses

 ( Think about it - even when its unintentional - the game of life is verbal. For most  of the ways in which we measure Intelligence – are tests that areadministered verbally, require the child  to think verbally and often answer verbally. What a huge disadvantage this puts on a person that may think inpictures not words )

I would argue that our entire school curriculum is created for the verbal thinker

Auties  are continuously coached on social skills

If you think about it, they spend all their day doing things they are bad in

The curriculum and life that has been created for Auties is what my life would be – if the world centred around chemistry ( shudder!!! )

It seems we go one step further – we take their gifts and find a way to disparage them

We call them Splinter skills

One more symptom of a disorder

 “So what if he can read at 3 … everybody can read eventually “ we say sadly 

( never thinking that the same argument  is also true of speaking )

Parents of auties hold “becoming indistinguishable” as the highest goal

“Just like everyone else" we sigh

Why ?

What if we  changed our mindset ?

What if we became okay with them looking odd and different ?

What if we  taught them enough social skills to navigate the world, but did not make it the fulcrum of their success and the core of their curriculum?

What If we focused on their strengths?

And help them build a life around that strength

“Don’t try to de-geek the geek “ says Dr Temple Grandin

For degeeking the geek is not only impossible, its ultimately cruel

No no no, I am not getting into the debate of autism being a good thing or a bad thing

Some of you may think Autism is simply a different way of being and some of you may think it’s a crippling disability

But whether we  think the former or the  latter – all I am saying is that –we can think of our child in terms of how they can build a life around strength

Rather than building a life around deficit compensation

We can find creative ways to harness their passion and turn it into a career.

 "I always sold my work, not myself"- says Dr Grandin in a conference I went to recently, "I always got in through the back door... I never passed an interview in my life "

When the game and rules of that game are so obviously loaded against  thedeficits of the children we love so deeply

Then there is only one  thing to do

Instead of just focusing on changing the child

We need to change the game 

On Hopeful Parents today

I am over at Hopeful Parents today writing on why we should build a life for our autistic children around their strengths
When I listen to words of adults who are on the spectrum like Dr Grandin, Dr Stillman, GTTO, Geekyhippie and  our own RCR among others .. its obvious that finding a passion is just as important (  in fact  maybe even more so ) for Auties than it is for Neurotypicals .
Our assumption is that each happy life has to be build on a foundation of great social skill
What if we changed our mindset
As my friend Kat says - "My child's life trajectory will be completely different than mine and that is okay  "
For what is important ultimately, is that our child can look at their life and see it as a happy, useful and  good life
If you have a minute to spare  please do go over there and read the article  here

Baby’s First Halloween

Well the "baby" is almost six

But that is what it feels like

DH and I have gone through the motions every year – not wanting to deprive R of an occasion that was so important to all children his age , yet suspecting that it meant nothing.

But this year – things have finally clicked

His class teacher said that they were doing "career day" for Halloween

DH and I smiled ruefully when we saw the note and exchanged raised eyebrows

However- we are good sports

And so we asked his therapist to show him a list of flashcard of "career people "

She said doubtfully that he showed some interest in the doctor

DH and I laughed at this for this is such an Indian stereotype – right after curry and spelling bees ( the joke goes – mom is telling daughter – "you can be Whatever you want ,……neurologist, general surgeon , etc and you can marry whoever you want – neurologist , psychiatrist, etc" )

SO DH went and got a costume

"Cant believe I paid 40 bucks..luckily its big enough so he can wear it for the next few years "

And so the day of "School Halloween"comes

DH has told R about being a doctor last night and has packed his costume in his school bag

But in the morning R keeps wailing and crying " no school .. no school "

We keep asking why he does not want to go to school

Finally he writes "Docter" on the frig

And then we finally comprehend – he thinks there will be a doctor appointment at the school

So we explain to him that he will be the doctor

We put on his costume – show him his name written on it R, MD

Oh how fast the tears vanish .

Knowing he will be the torturer not the torturee is all he needs to know

And school Halloween is great

On Sunday, for neighborhood Halloween, I am feeling too lazy

But DH forces me to go

"His teacher said he practiced" he says , working on my well-developed guilt muscle

R is absorbed in the intricacies of using "ou" and "ow" in words on a video he has found on youtube and tells me "no costume "

At his moment a HUGE gaggle of kids comes to our house in costume and as I hand out candy

As soon as R sees these kids, his mood changes

He does his excited happy dervish dance and rushes to get his costume

Luck is on our side and in our first stop is Lucy and she not only makes a huge fuss of him but also has his favorite candy "blue raspberry dum dum"

R informs all our neighbors that "we wish you a happy Halloween "( this is a modification of his favorite Christmas song ) and stares at them unblinkingly –

He also refuses to take any candy ( since the Blue Dum Dums and Junior Mint are not being offered by any other house )

But he is so cute and they are so nice that we have a great time

And at the end of each visit he crows "more trick or treat"

I think of my friend Jos's words when she spoke about her daughter

I believe L will do everything, but in her own time. I don't mind … she can take all the time she needs … but I have faith she will do it all."

And she is right

Baby's first Halloween has come 5 years late

Baby's first Halloween has taken a dress rehearsal in school and 5 real life attempts - for it to take on meaning

But its no less joyful for that

Happy Halloween

Social Skills & No More meltdowns Dr Jed Baker

Dr. Jed Baker was a phenomenal presenter.

Of all the speakers I thought he had the most useful and practical content for a parent.

Quick disclaimer: This is only a short  summary. There was a lot more in his session . And obviously I see things from my own lens



PROACTIVE ( RATHER THAN REACTIVE ) APPROACH TO MELTDOWNS

Our own Attitude

It always starts with you – the parent, the teacher, the professional.

Not the child

Dr Baker asks us if we can tolerate our discomfort- our self image- our worry about what the other people around us are thinking about us - 


Can we tolerate this  discomfort long enough to think about what to do ?

Because that is the beginning.

Its important to reframe a meltdown and see it for what it really is

It's the lack of coping skills of the child .

Its not the child playing mind-games with you to challenge your authority

The question we have to ask ourselves is how we can teach better coping skills ( not the question "what is everybody thinking of me")



Why do children and specifically spectrum children have meltdowns?

Difficulty in perspective taking

In this case the misbehavior is often unintentional. (Example the attention wanting ASD kids who pulls the plug of the computer to get it to shut down in order to make the kids laugh ) The important thing is to teach perspective rather than discipline

Inflexibility: Poor problem solving skills

Its important to practice social skills and "in context". Often professionals do a "counseling session" and tell the child what they must do the next time they are in the situation

But they don't teach it in the situation.

Repetition and practice is critical

Low frustration tolerance

ASD kids get frustrated really easily ( Tony Attwood referred to some data which shows that Children with ASD have 10-15% larger amygdales – which means their primitive stress response such as fight , flight or freeze are stronger )

The child can get emotionally hijacked

Frustration tolerance is a skill that must be taught. 


Dr Baker gave an example where there was a child that hated losing in games. So Dr Baker used a strategy of rewarding disappointment tolerance. Ie if a child tolerated X disappointments well – they would be rewarded. 


Practice with these skills can expand basic abilities to tolerate frustration.



What should I do to prevent my child having a meltdown?

Prevention is key

Make the child feel competent.
 When there is a task- such as homework - to be completed - follow the 80 -20 rule . DO the 80% easy stuff first. Then the hard 20% stuff

Avoid power struggles. Its best to problem solve together

Make sure the child does not have sensory triggers that are making it intolerable for him

If they are going into sensory overload teach them to be a self advocate for sensory break/better environment

Rewards new and better ways to self stim ( which really should be called Self-soothe, in my opinion )

Plan for the unexpected: when an unexpected crisis happens teach the child skills in advance such as

• Self talk: All problems can be solved if you wait and talk to the right person
  
• Create a relaxation folder for the child
  
• Establish a "safe person"
  
• Draw or write the thing that soothes you
  

What should I do when the child is having a meltdown?

Of course- the first thing to do – for you is to tolerate your own discomfort so you can think it through

It's important to understand why your child is having meltdown so you can plan for the future

If the child has been "emotionally hijacked" the best solution is to distract or soothe

Loss systems can work – but only if the child is present and aware. 

In fact thinking about "extinguishing bad behaviors" when the child is distressed and emotionally hijacked is very counterproductive (and kind of cruel if you think about it )



All the change does not have to be in the child. The environment can be changed to help the child

This next set of ideas that Dr Baker gave is pure genius and a true game changer .

It's a wonder that every school in the world does not follow this system

In the Special needs world we worry a lot about the lack of social skills training for our kiddos .

In fact we talk about the shortage of resources all around

We also worry a lot about bullying as our kids are so vulnerable to bullies

Dr Tony Attwood likens the school to a jungle for our kiddos. With bullies prowling the corridors like tigers ( my friends and I were sort of depressed in fact after Dr Attwood's lecture as he touched upon one of our major fears )

Bullies cannot be stopped by teachers as it usually is invisible to them

Dr Jed Baker has the perfect solution - to solve bullying AND teach social skills

The solution is Peer Mentors

What if peers in the class were mentors for children with special needs ?

This is a win-win situation for all

Mentors learn valuable leadership skills like compassion and maturity

Special needs kids get to learn social skills from those who can model it and live in a kinder environment

And the community?

The community benefits because being a good person is actually cool

He has created such a program in a school in New Jersey.

He showed some video clips of students in this program in an excellent school in New Jersey that he had started and it really made us all want to move to New Jersey (Almost.)

I think this has to be the way we start to think of helping our children.

Fresh out-of-the-box thinking.

I hope this summary is helpful to you 


Click here  for  his website

He has some excellent  books which some of my friends who attended the conference with me  recommended highly. And its next on my reading list 


Click here to  the link to his video of him talking about teaching  Social skills to kids with AS 

If you want to see a excellent  video of him that Autism Hangout posted on youtube
 

Autism Asperger Super conference; Dr Temple Grandin Session

Guess who I am getting a book signed by ?

No prizes for the right guess !

Cause we all know the amazing Dr Grandin!!!!

DH and I are just back from the Autism Asperger Super conference
It was really awesome to attend the conference with my DH and with 3 of my online Friends – T and J and M. Somehow it felt like I was back in school

The conference was FANTASTIC – Wayne Gilpin who was the MC and is the CEO of "Future Horizons" really put together a blockbuster conference .

He himself is the father of a young man on the spectrum

For me the highlight of the conference was Dr Temple Grandin

She was AMAZING . She , her books, her movies have taught us so much .

Dr Tony Attwood said she is an American National Treasure . And I agree

It was a happy coincidence for DH and me that some of the first books we read upon diagnosis were books by Temple Grandin and Tito Mukhopadhyaya – this certainly had a huge impact on the way we thought of Autism – 

Because we thought of things from R's perspective .

We tried to see and experience the world from his perspective instead of from a deficit-fixing perspective

We saw his abilities and his value not just deficits

Here is my summary – please do note that obviously I listened through my own lens and also paid attention to things that were of interest to me

So this is not a full representation of all that was there though I am hoping that DH and T, M and J will comment and add anything that I am missing

I am going to start with Dr Grandin though she was the third speaker

Auties have many gifts to offer the world

There are many genes that are responsible for Autism .. you know what would happen if we eliminated all the genes of Autism – you would have eliminated your next generation of engineers, professors etc

"You know what the Aspies are doing .. they are running silicon valley" she joked

She said that the Spectrum was huge and at one end of the Spectrum was the "normal spectrum "

Autistic identity

Dr Grandin said she would never want to be normal as she was very proud of her rational way of looking at things.

However Autism was not the central theme that organized her life . 

She thought of her identity in terms of her whole life !

"I see myself as a college professor "

Good Manners and Rules

Limit setting was so important .

She credited her 1950's upbringing of good manners and CLEAR rules to her success in life

Of course one must understand the reason for bad behavior and some bad behavior which is the result of extreme sensory sensitivity must be accommodated

It was very very very important do SOMETHING

"The worst you can do is let the autistic child play video games all day . Video games for no more than one hour a day "

Understanding the Sensory System is critical.

As is, making sure any hidden medical problems are solved .

Touch desensitization is possible and important for the whole family.

She said sensory readiness therapy is critical and is akin to taking the cellphone outside to " get a better signal "

Job skills

She said right from when the child is in middle school parents need to be focused on projects that could potentially make money - outside the house .

Always focus on what the child is good at and what the learning style of the child is – is the child a visual thinker , a music-math thinker or a verbal thinker ?

"The kid is good at computers – get him to fix the neighbor's computer. And then put the money he makes in an account and teach him to manage money "

She said she was a very poor student but learned a lot in school .

She said the current school system which demands that a child must pass for instance algebra before they can go on to Geometry is flawed 

An Autie may need to know geometry before they can understand Algebra 

Why cannot the school system allow for people to pass certain kind of math ? and not all kinds?

She said she could never have done algebra

Its very important to ensure that the Autistic person's abilities are being harnessed properly-


"I see too many autistic people with my intelligence level bagging groceries and cleaning toilets"

Its very important to be good at something that others are interested in

"I always sold my work, not myself "

Its also important for parents to be entrepreneurs – and be creative in thinking of how to get the child an "in"

"I always got thru the back door .. never through the front door .. I never passed an interview in my life "



Medication

She had a lot to say on medication –I don't know much about medication so please pardon any errors

She was positive about SSRI like Prozac and Zoloft and said she knows many people on the Spectrum who would not be able to do what they do without Prozac .

And said the atypicals like Abilify , Seroquel, Rispedal, Geodon may have severe side effects

She said that some of these second generation anti psychotics will fog up the brain and ensure the child is in a fog and can never program a computer –

While these medications are very valuable for some , she felt these medicines are being overprescribed. And when there are problems doses are being "upped " instead of decreased

She talked about the importance of physical exercise and Omega 3's and Sensory things like Weighted Vests etc .

She also touched upon the value of vitamins and supplements including probiotics.

As well as special diets

The Autistic brain is different from Neurotypcials)

One fascinating example was as follows

Dr Grandin said her brain worked like "google Images "

So when she was asked to picture a church steeple – her memory conjured up all the church steeples she had ever seen in her life

Whereas neurotypicals, when asked the same question , thought of a generic image of a church steeple

A brain scan showed that, indeed ,her actual brain and wiring was different – so that it was like her brain had a" high speed internet highway" inside her head that captured all images that she ever saw and she was able to retrieve them all at will

( This is indeed true of R as well – when we went back to India this time – he rearranged my parents set up on the staircase to how it had been in the past .

The thing is, the last time he had visited that house, was when he was 2 !!!)

• All autistic thinking uses specific examples to create concepts
  
• It is bottom up thinking
  
• ALL concepts are learned from specific examples
  

Teaching Auties

Its very important to teach by playing games to categorize things into – big-small, different shapes etc and then use the same objects and categorize them in a different scheme—This teaches flexibility of thinking . For example a small white bottle bottle can be "small" in a size scheme . And it can be white in a color scheme of categorizing

( though all autie brains are not identical to each other either)

Its very important to teach rules clearly including turn taking and waiting for your turn

Teach with real objects – example fractions can be taught through slicing a pizza . Adding and subtracting can be taught thru candy

Its critical to kep expanding their experiences – the whole idea – to take the high speed internet example from earlier – is to create many many "web pages

Autistic learning does start with memorization but as more and more information is memorized – it will be organized into more and more categories which will help thinking become more flexible

"The thing with Autistic people" said Dr Grandin, "is that they are always learning for their entire life"

Amen!!

I will soon be posting on the notes from the other three  fantastic speakers and hope they will be of use to you  

October Odds & Ends

Here is a little update for all the things I want to remember of this month

Pretend Play

So I do not know if I have mentioned before, but one of R’s interests is Christmas.

Stopping at Cracker Barrel, for instance is always fraught with danger as it has Christmas tree and R demands a Christmas as soon as we get home

Anyway like most Floortime Oriented parents our motto is – No interest shall go unused

And so we have bought these adorable Little people sets

When DH and R return from their Friday musical gymnastics – I set out the Little People package on the table

For the FIRST TIME EVER – R demands that I open the box as soon as he sees it
( This makes us ecstatic as R NEVER cares about presents much – certainly not something that is still in the box )

He fawns over all the reindeers in Santa’s sleigh ( though there is no red nosed reindeer and this is very annoying )

After I put R to bed– we arrange the 2 Christmas sets we have

You should see R’s face when he comes down stairs in the morning

He rushes straight to the toys – all thoughts of the usual morning DVD forgotten

He is playing (Appropriately as the developmental psychologists would call it





He has ideas

His ideas are still islands – not really well connected .

For example Santa comes to the town – says Ho Ho Ho Merry Christmas

But he does not do much else

The kids dance around the Christmas tree but that is all they do

Speech

While he is very very apraxic still – he is talking more and more

Even little phrases

Like yesterday when he tries to wake us up instead of the usual “stand up “ wake up”

He says – “Wake up … go eat tea” ( DH and my weekend morning ritual ) … and then points outside and says “when the sun is up .. it means wake up “

Yesterday on the trampoline

He is shooting baskets ( standing right next to the basket – lest someone think I am hiding a Michael Jordan here )

And he goes – S is for Soccerball , B is for Basketball and then he says R is for ..

I obligingly complete with his favorite R word “Rudolph the red nose reindeer “

He says “no, R is for R_____( his name , my favorite R word )

Really I am just soooooo grateful my cup of happiness runneth over.

I know there is a long way to go but I simply pay no attention to it anymore .

I just look at the next step ahead



Social

One of our good friends is having a birthday party for their 2 year old and invites us

They are very very very welcoming of R always

Pretty much all our friends are very accepting of R - but these two go a little beyond

For instance her MIL has bought a present for R - just becasue their daughter will be getting a present

We have told R about the birthday party well in advance

He has been practicing with the Sepctrum connections DVD Birthday Party scenes

( really the child has SUCH a desire to learn )

he behaves really well at the birthday party

The one thing that sets him apart is the stimming and the "eeee" sounds

Its a large barbecue so at one point in time he wanders off happily and suprises two people by randomly saying eeeee to them

For some reason their surprised faces makes us laugh uproriously

Though DH and while watching Dexter late in the night realize that we should take a page from Harry's( dexter's dad's )  book and teach R how to "act normal "

( For those of you who dont watch Decter the basic premise of the show is that - a police inspector ( harry ) adopts a boy called Dexter who has homicidal tendencies. So Harry teaches Dexter how to only kill bad people and also how to act normal . he is kind of a vigilante serial killer )


We dont ever want him to feel that stimming is bad or wrong ( becasue really for many auties - stimming is a release that calms them down )

 But we do want him to be able to stim in private

So that one day - if it matters to him - he can pretend for periods of time - to act neurotypical

I think a lot of autistic adults I know make attempts to blend it - but they learn how to do it in a hit or miss fashion

I think all parents of Auties need to have a 10 -20 year planning horizon for their child and then think of all the little steps that are needed to accomplish this goal

So for instance at 26- my dream for R is  to have, Happiness , to be  good humanbeing and have some way to make a living and hopefully also have friendship and love

Frankly I think the seeds are laid for many of these already

Awareness

We are also noticng a much greater sense of awareness

For instance last weekend when we are at an Aquarium at an Autism event - R goes to a "shark" instead of running away


 He expereince the Aquarium instead of being dragged from exhibit to exhibit

He notices the Halloween exhibits and coos at them "Happy Halloween" and counts the pumpkins



At the candy store - he takes a large lollipop and plonks it down at the check out counter next to me



Walks in the woods

we do much walking and treasure hunting in the woods these days

The Fall weather is just idyllic -

here is some treasure we discover last time.

 I am in equal parts disgusted as well as charmed by the tortoise shell





I write this post in my most favorite part of the weekend - friday evening

As its Fall break  for R - I have taken a couple of days off .

I cleared out closests yesterday and have generated 4 bags of clothes for Goodwill

We used to stick on to R's old clothes for sentimental reasons earlier  but we think now that its more fun to donate them right before winter so a child can have a a really warm and fashionable coat and trendy outfits

DH has done all the grocery shopping etc while I cleared two closets  . We have cooked . We have done laundry

On Monday the mad crazy week begins with all its stresses

But between then and now the weekend waits

With that feeling, I write  to the sound of the wind in the pines

I am in my favorite season,

In my favorite place

With my beloved husband and son

God's in heaven and all is right with the world !

On Hopeful parents today

I am over at the Hopeful Parents website today writing about changing the way we think about parenting an Autistic child
Shakespeare in Hamlet says that "Nothing is good or bad.. its our thinking that makes it so" and I find this especially true of Autism Parenting .
If you have a minute do over to that lovely website here