What we did in May

I have been absent from the blogosphere for about 3 weeks now . Too much work .And too much life happening. Promise to visit all my dear bloggy friends this week and catch up 
I did take pictures on my phone  this month and so I am writing about it month while I still remember, for the sake of reminiscing  later.

IEP meeting

We had an IEP meeting at school. His overall plan is good

1. Half regular ed with shared aide and
2. Half day special ed with two teachers - both of whom we really like

DH and I think this makes sense

The most important  accommodation we are hoping to work out - is that he come to school late to he can do his speech therapy in the morning. We think we will be able to arrange this

Evaluations

This has been VERY painful as he tests HORRIBLY

 His teacher showed us some test results - painful to read

Example he did not answer questions like _6_ .. as in what comes before and after 6  ( he has known numbers since he was 3 !!)

Glad his teacher sees his strengths

She said rightly that there is an intelligent child in there - but that academic success is about how well you present. And not what is in your head

Much as it is painful - she is absolutely and completely right

Reading comprehension

In terms of just reading - R reads at the 2nd grade level - but his comprehension  of sentences and concepts is poor.
 I talked to some of my friends and Reading Comprehension is really one of the biggest problems ( whole post coming up later on Reading comprehension )

We reminded our whole team that R has only understood language for the past one year and so to think of his comprehension issues as a 3 year old and not a 6 year old

Once reminded, they were all amazed at how far he has come. Its amazing how quickly we forget the challenges we have already overcome and get fixated on the challenges yet to come.

Its his ability to travel that we need to demonstrate.

 I think everyone - even educators custom their approach on perceived capacity to learn and that is why we need to always show that his ability is great

Tonsils surgery

DH "spontaneously" decides to get his tonsils out . His doctor has an opening that week and the schedule it right away

I read about tonsil surgery recovery on message boards and hear about how painful and horrible it is .

 I plead and plead  with DH to not have this surgery but DH claims those people are "wimps and pansies" and have "milk running through their veins".

That all I need to do "drop him back home on Friday after surgery and  just go back to the office after that".

However after the surgery - we realise that those people were not wimps and pansies after all and that their describing this surgery as the "worst torture anyone could go through" is actually rather an understatement.

We have a difficult week as DH is in a lot of pain and  I have to do a lot of things that DH does ( like grocery shopping, carrying laundry here and there, getting R ready for school etc )

Though its difficult there are many funny moments too. Like one morning, when I forget to call in the day to check on how he is as I am running from meeting to meeting, I get a voicemail from DH which goes like this "

"if you are done putting the man on the moon, maybe you could  find a few minutes to call to check on your husband".

My big strong DH is not usually prone to self pity( that along with a tendency to martyrdom  is usually my thing)  and this voicemail makes me laugh till I cry

The start of summer vacation

How can I describe the glow on R as soon as school is over?

I think being home with DH is one of the most therapeutic things for R.

DH is one of those people who carry a very calm, soothing and accepting atmosphere.

The thing that worries me is what will happen when school starts - its an even longer day and I just wonder if it will wring out R

Though I love his teacher, school is becoming a great source of anxiety for me .

I wish there was more flexibility - that we could do school for 3 days and a kind of homeschool with therapists for 2

Its difficult to leave home everyday as he watches from the garage door dolefully - can you see him standing on his toes watching me leave sadly ?

Mother's day

One of R's therapists gets him to make a Mother's Day card - she writes down a social story about Mother's day
I adore this card and stick it on the wall and R beams with pleasure

Play and Language

His spontaneous language is coming along great

The other day his PT was stern with him and he told me later when I asked him  mean and mad"

When I asked him how that made him feel , he said  "worried"

This is really great language expression for him

His pretend play skills have increased a lot

He goes around finding spider webs and singing "Little Miss Muffet " to them

He plays out his version of "The wonderpets Save the Dinosaur " by trying to get me to rescue bugs of all sorts who are "trapped " in spider webs . We must sing the wonderpets song and rescue them

One of the "Little  Einsteins" story he loves right now is about a little totem pole that gets "build upon"  and becomes a big totem tale thanks to the shenanigans of the and he replicates this with megablocks
This is his version of the "Tall Totem Tale "

Music

One of the things R loves most is music and song

Earlier it used to be me who would make up songs for him and now its he who is always adapting

His current obsession is "Coke and Sprite" ( no idea why ) 

There are also some super geeky parodies on youtube that R watches regularly ( the guy who put up that video must be wondering at the great increase in views :-) )

He also takes basic songs that he will sing to the different words

For instance if I take the tune of "There was a farmer had a dog , bingo was his name o "

and take it to "there was a green bottle with sprite.. sprite was its name o "

he will quickly make the same song about Coke and Fanta

His music interest is burgeoning as this week he goes to his teacher and play a tune ( Mary had a little lamb ) that she has never taught him but he learned from Nick Jr

The other thing I am pretty impressed ( but I am easily impressed by R ) by is how he notices the patterns of music. He keeps organising songs by tunes.

While a sing to him all the time - I have never noticed this until he points them out ( like the ABC song, Twinkle twinkle little star, Baa baa black sheep - all have the same tune )


Engagement

His general engagement in life is great right now. The other day DH and I are bickering in Walmart ( stupid AT& T has bad coverage and we cannot find each other ) .

R for the first time ever - takes my hand in one hand and DH's in the other and puts our hands together -

He is constantly dragging me everywhere with him ( another reason why I cannot blog ) to do experiments like learn about shadows by looking at the shadows of numbers
( I really love this )

He still expands in breadth and not in length -

like if he has a theme going on - where all the Little einsteins get into the rocket to fly away in a mission - that is where the story ends .

If I introduce an idea - like get a bunch of "umbrellas"  from DH's bar ( very enticing I think- colorful perfect replicas of umbrellas  ) and say that The Little Einsteins have landed on a rainy island and need umbrellas - he will promptly reject my idea

This is the crux of Floortime - to have a long unpredictable exchange.

You start with their interest - but the idea is to take the exchange down unpredictable paths and have the child come along

What I am noticing however is that while he rejects my idea at the time - he will try it on a little later .

So later that afternoon he takes the Little Einsteins with unbrellas .

And this morning he informs me that "rain and umbrellas go together"

I think Autistic children have many ideas and thoughts and its us that are not usually able to see

I think if one has an NT child or has had spend a lot of time thinking of and longing for an NT child - its hard to see the beauty of the special needs child .

Its like the son and the moon.

And how you cannot see the moon when the sun is out bright and shining

But for DH and me who have only known our autistic son .

For us there is no longing for the sun , we revel in the beauty and magic of moon light

I wake up in the morning with my head on DH's shoulder and hear a small doleful voice at my side

"Mama is hug Papa .. papa is hug mama"

The child hates being left out

DH pulls him up between us and he says "mama and papa hug R"

My little family

My circle of love

Stress Anxiety and Autism: SOS Best of Best Bloggers

Temple Grandin once said that fear is the primary emotion of Autism

I often think of this when I think of R

My gentle sensitive child

( I believe, in fact , that fear is the primary emotion in all Autistic children – even those who have aggressive behavior.
A child may respond with an angry meltdowns, another may shut down and a third child may show deep distress.
But even when it looks so different its simply a response to fear – the only difference being whether the child's instinctive response to fear is fight /flight/freeze )

And this fear can lead to a lot of anxiety and stress

I know it does for R

For if you think of it our vulnerable auties show immense courage going out everyday into a world that is so contrary

Where they are constantly being taught

Where many things that soothe – like humming etc - are treated an inappropriate stims that need to be extinguished ( merely on grounds of looking odd ).

Where no one ever thinks of their rights to just be who they are

Or of their right to have unscheduled downtime

In addition, they often have parents who keep wishing their child would change and be that version of the child that they were meant to have( even the parents that love them deeply )

And there is another stress to deal with as they grow up

 If autism is such a big part of their personality and if all their life they are told that( explicitly and implicitly ) autism is a very bad thing –wont they feel at some level that there is something very wrong with them?
With all the ways in which their self esteem gets attacked, no wonder anxiety is a constant companion

I used to feel overwhelmed in the beginning thinking of all the things that I would not be able to solve for R ( sometimes I still do )

Especially with regards to his anxiety

For he has so much of it

So small and vulnerable he seems sometimes.

And so large and hard the world seems

But two things have helped

The first is realizing that I don't actually have control over how the world is with R

( I had an epiphany one day while reading "The ovely life". In this book, Vicki Forman writes that all mothers believe that they can prevent anything bad from happening to their child if only they pay enough attention. On reading this, I realized the belief that I had been torturing myself with - that I could have prevented or cured autism - was actually untrue )

Feeling in control in the way we sometimes talk about it regarding parenting, is an illusion

If anything, the paradoxical truth of control is that the only way to have control , is to be fully aware that you have very little

The second thing that has helped, is knowing that while I have no control over the world – I am fully responsible for being the kind of mother I want to be

And that I am fully responsible for the reflection my son sees of himself in my eyes

Knowing that I and his father have a big role in his self- concept – we have chosen to treat him always, as a priceless gift

For really, anxiety and stress can be reduced in two different ways – one way is to make the world less stressful

But the other way is to make them feel that they are able cope with the world – by boosting their self esteem

And so I have chosen to be a deeply adoring mother

Never thinking – let alone alluding – to a wistfulness for a different life or a different child

"Do you know you are the best thing that ever happened to papa and mama?" I tell him each night, in his bed time routine , "you are the child of our dreams"

In this way, I put a coat of my love on him , to protect him from a world that is sometimes too cold

So that, no matter how much life whispers insidiously, that he is disabled, broken

His inner voice whispers back -no I am not, I am amazing

And as he thinks, so he will be



Please join the fabulous Danette in her Best of Best Bloggers Event where bloggers share their POV on Stress and Anxiety tomorrow 

Rewriting your Story

Once life drops a challenge like Autism, we realize that the story we were living in, has met with an unexpected twist

In the minutes, that it takes the psychologist to tell us that our child has autism, we can find that our story is going to be completely different from that of our friends.

That, in fact, we are going to be living in a completely different genre of stories

We search for those with stories like ours

And we find them

We tell them our story

And we listen to theirs

We give comfort

And we feel comforted

And that was the way it was with me

But as time passed, I saw that I could rewrite my story

Indeed it was critical to do so

I realized that the most important story that I will ever tell, is the one I tell myself.

About me and my life.

And that I am not just the central character of my life

But also the author

Its most important audience

And the narrator

And so the story I started to write, has become a story of gifts and gratitude and love

And not a story of loss and fear and guilt

And I see my child as different, even gifted

And I stopped seeing him as broken

I have come to see the difficulties of my life

But am still deeply aware of its essential sweetness

And I find that I am not living in a sad story

Or a make-the-most story 

Or even a second-best story

And that the story that began so promisingly with “once upon a time” does end on a “happily ever after”

Because this is my story

And that is how I write .



This post has been written for Hopeful Parents. If you have a minute do visit that wonderful website here

A Floortime Consultation

Dear readers who don't have an interest in Floortime – you may find this post boring - please feel free to ignore this post 

Sometimes Floortime goes really well – like it did in the first couple of months of the year

And sometimes it does not – as its been these past month and a half I have been feeling a stuck in Floortime – not knowing what to do next and also feeling a certain dullness of spirit –

And so DH and I decide to go to a nearby city and resume our meetings with our Floortime Consultants ( FC)
It really is not the most auspicious time for us to go for an consultation as R has this dreadful mouth allergy – which has got infected and so he was in a lot of discomfort –

I ruefully say to DH that she will probably spend some time with him now and tell him we should let him just play with a string for the next few months

However DH is much more optimistic than I am and is confident that we will be able to show her his abilities and so off we go

We met with the consultant  for 4 hours over a couple of days

Here is a summary of what we learn

Obviously our FC's recommendations apply to R ( the I in DIR stands for individual ) and to get the most benefit out of Floortime its best to work one-on-one with a professional who knows you and your child

However not everyone can afford a FC or is following a Floortime based home therapy program.

Our FC is an excellent psychologist and some of her excellent advice could help any autistic child ( heck it could probably help any Neurotypical child – or dare I say – adult )

Here are some excerpts from our sessions:

A Floortime session in the consultation

R is every bit as distracted as any child would whose lips were cracked and bleeding would be

When we enter the consultant tells us to show us how we play with him
I try but am ignored by R

We tell her that R need to explore the office for a bit which he does
He is a little distracted and stimmy but shows some flashes of his usual self

Once he makes an elephant from blocks – the ears wont stay on and pushes the elephant in frustration
He holds the ears in his hands and looks sadly

The FC asks us if we know what he is thinking

I explain why he is frustrated

R comes to me with his ears and then I say "are these ears?"

He puts them on my ears and I "become" the elephant

The FC is thrilled and exclaims "that is what I am talking about.. understand his feelings .. respond to him without any judgment"

He plays with her wind up toys ( her favorite Floortime toy )

He plays with DH for a bit with cars

A few times I try to intrude and he is annoyed and goes to DH for comfort

One of DH's great strengths as a floortimer is that he is VERY patient and never in a hurry and can intuitively take R's pace

Several times he and she and we play with wind up toys and hand puppets who eat various things

A Floortime Session with the FC

This takes place the next day

When we go the second day – R surprises us with his eagerness to go inside the and says "All done living room ….go Play with Play doctor"

He asks to play with "the Food and the woof ( dog ) "

He knows in the food box, there are 4 Pizza pieces and he wants to put them together ( I know this as he has been learning Fractions on Morestarfall )

However the consultant goes through several circles of communication with R trying to collect the pizza pieces and the dog taking them away

( An important tip – when you are being the hand puppet – you are the hand puppet – so you don't say in a narrative style " The dog wants the pizza "
You ARE the dog and you say " I want the Pizza ")

But the dog wont let him and keeps taking away a piece in his mouth

R is very bugged by the dog and holds the toy dog's face and throws it to the corner

But the dog always comes back

DH becomes a spider and intrudes also

The FC – tells us – "don't be easy to ignore .. be persuasive .. be intense ..be in his face.. use fewer words … be relentless"

This goes on and on

And here is where he surprises us

Since just throwing the dog away did not work 2 or 3 times -- He finds a toy chest and puts the dog into the toy chest and shuts the chest

The FC exclaims in satisfaction – "THAT was beautiful – he solved a problem"

( this is how you build the problem solving muscle – and make no mistake – it IS a muscle - through Floortime )

The FC tells us that we need to be in his face , high affect ,


Here are the main pointers from the Floortime Consultant for R

Why does he play for a little bit then go away ?

Because its too much ; he needs to regroup and process and then be back.

Should we let him leave or should we pursue the same theme? She said, if she feels he needs a break then she would let him. However if he is just avoiding for another reason she would pursue further.

Play dates

We should do playdates – but with one child ( no social groups – as R would find it easy to fly under the radar in a group ) preferably a girl who is 7-10 years old – According to the doctor these are the best Floortimers

She says she trains some High School students but that her most important instruction is always that they both have fun and have joy . The biggest goal is pleasure

Aides in School

 Aides tend to become compliance enforcers and that is really not required for him – he needs an angel on his shoulder that keeps reminding him to reconnect with what is going on in the class- for instance if he shows manipulation skills – the aide should feel joy at that not shut it down
We don't need to be looking for a lot of independence either

How can we elaborate on Play Scenarios?

Step by Step :

R like many kids started to pretend play with sleeping and eating - example one play scenario is that – his dolls go to bed – we elaborate with snoring etc but there it ends –
He only increases the breadth – so his other dolls go to sleep …how can we deepen the plot ?

Her answer is that we need to make the game more elaborate but just adding one more step at a time –

So we could get 5 dolls to sleep and then do the song – 5 in the bed and then the doll falls down and so on
Or add an emotional idea – example one of the dolls says "that is TOOO LOUD " ( that is the doll is having an emotional response –feeling bugged )

In the eating game where we are feeding the dolls, add maybe an unexpected twist – preferably an EMOTIONAL idea like a joke – where the doll says that is YUCKY and spits the food out
The concept of joke and unexpected is HUGE

Go Slowly

There is no rush in Floortime – don't be in a hurry to climb the developmental ladder – build a strong foundation at each stage

Tailor everything to where he is Explore higher levels of Cognition

We talked about his several interests such an planet, numbers , music – She said we should take these further and further

We said that we found out yesterday that R knows multiplication and her response was that this flat and rote – we need to see if he can problem solve –

That is the point of following his lead into things

We want to explore the regions on his cognition that are not being touched currently

Don't ask him questions like" what is a triangle" he knows that – that is boring
We said – he loves his old familiar things – ( like Baby Einstein ) – she said that is fine – I am not saying take those away

But keep building on each interest

Example, if he can distinguish between Beethoven and Mozart – ask yourself the question – where could this take us

The idea is an opening up – of R have more, deeper and bigger thoughts and following a passion to eventually have grey area thinking

For in Floortime we are teaching how to think

Whether its numbers or planets that your kid is interested in - you are going to use it to develop the most important skills in Autism - relating ( making you a part of their shared world ) , communicating and thinking ( solving problems , metathinking - which is thinking about your and other people's thoughts , and grey area thinking )

She did notice all his strengths and thought of him as "full of potential" "has a lot in there" and said who knows you may have a mathematician in there ( but that honing rote skills will get us nowhere )

I also noted with interest that in developmental models you don't get any points for a well mannered/compliant child

Harness motivation in everything

Ask all providers – ST OT and PTand  conversation and play therapists  – how they are using his motivation – not just building his skill

School

The FC had lower expectations from school

They are going to focus on the building of rote skills that he will acquire anyways since those are the things he likes
It's the gray area thinking that he needs that school will not help him have

We talked about how we are thinking of mainstreaming next year as he is unhappy in the special – ed class
Her response that he probably likes the main stream class as he is able to ignore them and go under the radar

Where as his special needs class he notices them and talks about them later ( DH and I are not sure we agree- I think there is too much emotional energy he spends worrying and feeling unhappy )

She also said that before thinking homeschooling – just think about how much more you can do with the hours you have with him and when you are in charge – so if he has 30 hours of school – he has another 50 hours when you are in charge .

And that in her opinion parents spend way too much time thinking of how to optimize school ( where they have little control ) and too little time thinking about home ( where they are completely in charge)

We talked about our idea of a peer mentor and she said that in her experience this does not work too much as ist grade onwards school is focused on rote academics and there are very few opportunities to play and for a peer to mentor. She does not think it's a bad idea but does not have too much hope for it

How much Floortime is he getting?

I said we have Floortime as a lifestyle and we 30 mins-60 minutes daily.

And she said we have to do a lot more – get his therapists to modify their methods to incorporate Floortime
Intrude when he is on the computer but not in an intrusive way – example – get your own computer and do what he is doing with him

Outside help

 Get some outside help – their only goal being that they both play with high energy and they both have fun

Physical Exercise

 In her POV – the ratio of something physical should literally be 20 minutes in an hour
Jumping Swinging Crashing into things –

She said that he could start his day with singing and swinging – instead of computer ( which will only start off a self absorbed day )

All these things will help him organize himself

Computer

She said we should limit access to electronics and then maybe has access to computer/wii / DVD anything with a screen about max 4 hours and keep reducing and he has to ask for it

So he is not always choosing between computer and us

Avoid repetitive tasks

 Neurons that wire together , fire together

If you are engaged in repetitive tasks - Neuroplasticity means that those neurons are firing together

Its not neutral

We brain – not an I brain

He spends more time in an "I " brain and we need to put him more on a "We" brain

Can you use even the computer to foster the "We" brain – can the computer have pictures of mom and dad
(Book Recommendation: Mind Sight Dan Seagal )

She pointed out several times how hard R is to engage and how much he ignores our overtures

How much of his interactions with him are very much on his own terms( ouch !!- while this hurt to hear , DH and a friend pointed out that is the definition of Autism)

Take the things that are best and figure out how to make them longer

 So if he enjoys swings and snuggling and jumping – and see how to elaborate and make them fancier and fancier
Keep adding variations –at little variation on what they mostly like and that adds a twist
Look at all the games you are playing and brainstorm on ways to add a twist

Use the ways/ mode that get you connection

At that point in our conversation, R was building a Giraffe with blocks and we asked him "what are you making "?

R ignored this

The FC said, "Don't waste energy on what he does not respond to – for example " don't ask questions … don't do a narrative"

Because we can put out a lot of energy on what he does not respond to and get discouraged

Instead of speaking, perhaps we could use the written word and song

The FC wrote GIRAFFE and HORSE on two pieces of paper and asked him to choose after getting in his face

Then he made Steps and she wrote STEPS

Then we elaborated ..and the giraffe and Rhino went up the steps

And we made a song about the rhino falling down

R smiled at this and completed the song

Then I fed the rhino a banana

Always add the unexpected

 The FC suggested that its very important to be unexpected – for instance, the rhino would spit out the banana and say "that is Yucky"

The rhythm of the interaction would be – expected-expected – unexpected – so if you are playing pillow sandwich – you would Add ketchup and mustard and then suddenly you would add ice-cream – that he may find funny

If he has a routine that he repeats in the morning – add a twist and say you are going back to bed ( here I added that wouldn't an unexpected thing be "stand on your head after you wake up " – her point was that that would not be as funny as going back to bed as it was not the twist on the same thing )

Going for the WOW

 Make an inventory of everything that works – everything that elicits a WOW
You want to stretch stretch stretch and open the mind and open his life

Prioritize things that you like too

If there are things that the both of you like doing - - they go on the top of the list

Add drama to everyday favorite things

 For example one favorite thing of R's is when I get home – So DH could do a countdown and then the real life event would be dramatic and exciting !

Neuroplasticity

She repeated that "neurons that fire together wire together "– example a 90 year old brain that takes lessons to play the violin will start to change their brain - which is why all individuals are capable of doing a lot more then what their initial capacity appeared to be .

So you have to make hay VERY slowly – but there is also no time to lose 

Following your child's pace

One of the most challenging things when you start with  a home therapy program for an autistic child,  is all the stuff you are supposed to do

All the aspects  you are to work on

Sensory Regulation, Engagement, Problem Solving, Pretend Play, Peer interaction, Language - the list is endless

Though I love Floortime , one of the things that we found impossible to do was the usual Floortime recommendation of 2 play dates each week with a child

We did try

Our friends would offer to come over with their children when they learned that we were trying to get R to have play dates

R would be miserable and try his darnedest to get away from the child

The child would try a few times and then give up

And I would end up playing with the child

After a few attempts, we gave up

It was just pointless

(Yet  I felt some guilt over yet one more thing we were supposed to do and did not )

But then we  started to wonder , was ignoring this facet , such a bad thing after all

Perhaps he was not ready to learn peer interaction just yet

 Perhaps it made more sense to focus on one thing at a time ( and there were plenty of other things to choose from)

And I think we were right

For suddenly this last weekend , whave a couple visit us with their kids

Lo and behold, we  find him  for the first time ever  seeking other kids out

Wanting to be in the company of these two girls

Trying to play with their toys

Wanting to ride in their car

Wanting to stop by their house today when we are driving home today

DH and I have decided that this summer we will focus on Social Skills

I am often struck by  how R seems to develop every ability, albeit in his own time

How much we save - when we try to follow his lead - in what to work on ( For isn't there always something to work on )

 There is a time to plough the land and a time to plant the seed and so it is with raising children

Timing really is everything

And so instead of hurrying him along over the steps

We now let him take his time.

There is no rush, we say to him.

Feel that step firmly beneath your feet

We are ready when you are

This post has been written for Dr Boucher's Blog Carnival on Readiness which will be published on April 25th  

The beginning of April

Here are some of the things that happened in the busy busy month of April

Team meeting and change in home therapy program

One Sunday DH and I sat down to plan what we want changed – we took a big blank piece of paper on top of which we wrote " I WISH "

We made a list of all the things we wish for for R

We went over our lists and basically it boiled down to be able to communicate more

Specifically

1. We want him to answer questions
2. We want him to ask questions
3. We want him to be able to talk about a topic

So for example a therapy session could go like this

1. Look at a picture and describe it
2. Choose a book – read it and talk about it
3. Take a walk and describe things  you see
4. Go somewhere take pictures about that place and then talk about it  
5. Play with a toy scenario and talk about it

We want to continue with teaching him some specific social scripts . Some automatic social greetings. Some basic info about himself ( for safety reasons )

Our awesome therapists are all keen and willing to try this plan out –All of them have know R for atleast half his life and they all know that his needs are changing

In the middle of the meeting – R comes in – and looks around trying to find a place and observes sadly "no chair for R "

This is so cute that we fall over ourselves trying to get him a chair !

Once school is out we want to have a more intense ( more hours ) at home and want to take on some academic Ist grade stuff as well - the idea is to teach him how to do independent work – with work sheets etc
Independent work at school seems so daunting – yet I have to remind myself that 3 years ago he did not know what his name was

Play date

Some close friends of ours come and spend the weekend –

Spring is here and its all warm and wonderful this weekend

We have a marvelous time and talk late into the night

They have two daughters – one who was in fact born the same day as R

These daughters are just AMAZING – being just a year apart they are busy playing together all the time

The first morning they are here, R figures out that they are not bothering him at all – they don't interfere with his two main interests – the computer and the Wii

By evening HE is interested in playing with them and when we go to the park he insists on riding in the car

For dinner we go to Corky's ( yes a nice dinner out means Barbecue to us who have adopted Southern culture ) – while returning back to the cabin – R insists on riding in their car- this is a huge surprise and I don't know how he will do

When we reach back to the cabin – I tell Kelly how surprised I am and how he has never done this before – and she says she is very honored

She says he was totally fine and in the middle when Dave pointed out how we were driving in front – he suddenly started to laugh and then everybody else joined in though no one knew what the joke was
( this Iam familiar with as I have done it before – R starts to laugh at some secret joke and I though I have no idea what the joke is cannot stop laughing either )

Their daughter says she is the source of R's laughter as she was "constantly kicking his chair to keep him company ".

 Such are the simple ideas of companionship that small children have

The grown ups chat with glasses of wine and the kids all get stuck to their screens

When they leave we are very sad – though they give R their guitar since he was VERY enamored by it ( which is why now the boy has a bright pink guitar )

Floortime

Has continued to be weak

Sometimes I cannot find the energy to play , sometimes R is too exhausted –

sometimes we are playing but both of us are too tired and get stuck – For instance here R – we are playing with the Ferris wheel set of Little people – and R is stuck on the fact that the Santa doll is not sticking firmly to the seat.

Now the sensible thing would be to use that as a beginning point of a dialogue – but of course I do not!

I have been traveling a lot and R has had bad allergies .

All winter I spend yearning from for Spring and I forget completely about all the allergy issues

One night his eyes are so swollen – he cannot open them at all – he cries and cries( I am sure it must be so scary to suddenly become blind ) but of course it makes things worse– and I spend the rest of the night comforting him

Nowadays I find that I can no longer take leave home at 5.30 am and return at 11 pm with a full packed day ( which is what a day trip to Cincinnati/Chicago/Detroit looks like ) – though I still do it.

I am drained and exhausted all week and feel like I cannot catch up

R does quite with these day trips as long as he has a detailed schedule – DH is completely able to take care of him by himself ( Of course  R really is  easier to take care of than he used to be- there was a time when he had to be carried every minute of every day  )

Though – he gets so thrilled when he gets into our bed and finds me that he spends the rest of the night periodically at clutching at me in an paroxysm of fondness - which means we ae both very exhausted the next day

We are driving down to Georgia this weekend, to  resume sessions with our Floortime psychologist next weekend – and I am hoping that will re-energize me and get me back some mojo

Fun In spite of all this fatigue - its not that w are not having fun though

DH and I have discovered a new addiction – The Sopranos – and we are hooked !

On the surface this is a show about the mafia – but really it's a study of the human relationships and the human psyche and its contradictions

R also has discovered two new thrills

The first is a paid subscription to get to "more starfall" – R is just loving this website . He has been asking for it. I have been hesitant because there is already so much on you-tube.

However – there is this page which has a list of number – where only "1 " is clickable and does various antics - the rest of the numbers are grayed out .
This of course is to tease kids like R!

I finally go ahead and fork over the $35 and am immediately mother of the year

Another attraction ffor him are all the free apps ( free this month because of autism month ) from kndergarten .com that I have downloaded –

Excellent quality – especially since we are looking to get him to answer more questions – which is the format of many of their apps( what does not belong? what does what ?)

I have been listening to loads of books on I-pod myself – I am really enjoying the "Mr Monk' series –  I feel that Mr Monk has Asperger Syndrome

Besides these pleasures, there are few places on earth as beautiful as Tennessee in the Spring

and everywhere you turn there is much to feast on

Dogwoods and redbuds are in full bloom ( the background picture for the blog currently is from my neighborhood )

School

I know I have mentioned this before,  but R has a few very loud children in his class

( all the kids in his class are sweet and mean no harm – its just that the noise is hard for a child with issues with auditory defensiveness)

Anyway his fabulous teacher has written social stories – one of the stories is about a child X who has cerebral palsy

In the social story the teacher is trying to tell R that child X cannot run, walk or play like R and so he expresses himself in the way he can

All this is true but my heart breaks for X and X's mom and it makes me cry

I wonder if my friends with Neurotypical kids worry for me like this-

While X's mom takes it in her stride like I do

The last time I went too the dentist – in the Hygienists' office , I saw that there was a picture of a girl in a wheel chair – who I recognized from R's old school –

I asked about her  and I mentioned that my son was in that school when he was 3 due to Autism

She told me that he daughter had brain damage from her being in a car accident in her 7^th month of pregnancy and the fetus being deprived of oxygen

But she too referred to her daughter as her sunshine ( not unlike the way in which I call R the human Prozac)

I think there is something very unifying in the shared experience of parenting kiddos with special needs ( or maybe even just parenting )

And all my prayers that night are not for me and mine, but for X and his family

Sometimes its hard to make sense of the unfairness of life – especially where the suffering of little children is concerned

But even with all its unfairness, life can still be very beautiful

And parenting can have many many joys, no matter what difficulties we face. Perhapes this is the way we all feel about the parenting expereince no matter how difficult it looks from outside


"[He] gave me eyes...
[he] gave me ears;
And humble cares, and delicate fears;
A heart, the fountain of sweet tears;
And love, and thought, and joy."
- Wordsworth

All the latest Spectrum books

If you want to read reviews of all the latest books in autism and ADHD - reviews by parents and bloggers
AND participate in an 1100 dollar giveaway go here ( click on image )

The wonderful Danette Schott has created an event for her April 2011 edition of  Best of the Best (BoB), Edition 5. This edition is in honor of Autism Awareness Month and in honor of ALL invisible special needs, such as ADHD, SPD, and mental illness. Bloggers have united to review over 50 books, DVDs, and even a b-Calm. Most of these reviews also include giveaways! A total of $1,100 products are being given away to readers!

Interview with DS Walker, Author of Delightfully Different

I had the privilege of interviewing the fabulous D.S. Walker - author of Delightfully Different.

In the process of reviewing her book and interviewing her, I have really started to like this wonderful mother a lot. She is smart, she is warm and she is real!

Read her interview and you will see why

Here is her interview

Floortime Lite Mama:   What has been the most rewarding aspect of raising a child with special needs?


D.S. Walker:  I think she has made me a better person and she has definitely enriched my life. I have been a liberal most of my life, but patience was not one of virtues. She has taught me infinite patience and compassion. She has made me think about so many things that never would have occurred to me before she was born. She is a great philosopher although I do not think she realizes this. I love talking to her.

My passion in high school was writing, but I gave it up after college and I would never have returned to it without her. She gave me my voice back which is helping to heal our family and bring joy back into our lives. The difficulties she has faced in her short life motivated me more than anything else ever could.

Her determination to overcome obstacles amazes and humbles me. I see her work so hard to keep it together when her senses are overloaded. She and others accomplish so much while having to focus with the equivalent of having a bright flashlight shining in your sleep filled eyes or a jack hammer blasting next to you or wearing sand paper for your clothes.

She is an excellent student and she has already set goals for her future. She has musical talent that boggles my mind since I am pitchy when I try to sing. I rarely remember the words to songs much less where they occur in movies and I certainly could never write a song. I am very proud to be her mother no matter what she does in her life.

Floortime Lite Mama :  What has been the most difficult aspect of raising a child with Special needs ?

D. S. Walker The most difficult part of raising a child with special needs is forgiving myself for the mistakes I made before we had the right diagnosis. It was hard to forgive my husband and myself for not understanding our own child and consequently for making her life harder by listening to bad advice. It is hard to let go of the anger at others who failed to understand too, but it is also an important step to being fully present to help her.

The hardest part is not directly related to Asperger's Syndrome. The hardest part has been related to all of the misunderstandings and to helping her overcome the effects of bullying. Even her twelve year old brother gets this and he is vocal against bullying and in support of autism awareness. I am very proud of him too.

Floortime Lite Mama:  How close are Francesca and Mia in personality to you and your daughter?

D.S. Walker:  I changed many things to protect others, and Francesca is a better person than I am I think, but there are similarities. I grew up in the rural South with a close family and animals and I do love the Rocky Mountains and my family, but I have three older brothers and no sisters. I wrote some of Francesca's story the way I wished it had been not the way it occurred.

The close bond Francesca had with Mia is similar to the bond my daughter and I share, but she did not watch me from heaven although there are times I think she can see my soul better than anyone. Mia isn't exactly my daughter either. My daughter composes, but she does not share her compositions with others although we have people who will help her if she ever decides to do this. She did start piano lessons when she was four, but she quit two years ago, and she is in the orchestra, but she does not play the cello. She was not diagnosed with Asperger's until she was ten and we did not have a wonderful aunt to help. All of the events in Mia's life are different than the actual events that happened to my daughter.

Floortime Lite Mama : Francesca always seemed to be the one who best understood Mia and the problems she faced. Sometimes it seemed as though she was the sole-translator. Many mothers find themselves in this predicament - do you have any advice for moms who are in a similar situation where they don’t receive understanding from their inlaws, spouse or parents

D.S. Walker: The best advice is to remember to let your husband help and remember that you love each other. It is easy to get wrapped up in caring for the needs of any child, but when your child is hurting it is especially easy to neglect your relationship with your spouse. Make time to still be a couple and include him as much as possible. Make sure he hears the same things you do from the doctors and/ or therapist so you are both on the same page. My husband has not always understood our daughter, but he has always loved her and he is working hard to mend the relationship with our daughter.

My in-laws are good people who love all of their family. The in-laws in the book are different than my in-laws. They have never been completely out of our lives. Still, their lack of understanding kept them at arm's length at times and we did not push the issue like we should have. This was a mistake in hindsight, so no matter how you feel about your parents or in-laws remember they are your child's grandparents. Do you best to educate them, and if they do not understand, give them time and keep showing them how they can help as long as they are not abusive to your child.

Floortime Lite Mama : Any questions you wished I had asked ?

D.S. Walker : You asked good questions. I would suggest that parents of special needs children accept help when friends offer. Our friends are the ones who have helped us remain sane. They have been there for our son too.

The journey of raising a child with special needs may feel long, but the reward is great!

This interview along with the book review ( here )  are part of  the awesome Danette Schott's Best of Best Bloggers April 2011 event

Delightfully Different by D.S. Walker Book Review

Delightfully different is a charming story about Francesca Lung and her daughter Mia.

The narrative alternates between their voices.

Mia is a very bright and loving girl. Mia's description of how she perceived her early life are especially interesting to me as her personality reminded me a lot of my own son- ( the close bond to mom, the different anxieties )



She has Asperger's Syndrome. However it takes a while to discover this.

Her sensory sensitivities add a lot of difficulty to her growing years.

Its really not just the sensory sensitivities, but the lack of tolerance from the people that are around her.

This lack of tolerance ranges from, the preschool teacher who insists that 3 yr old Mia must have a bite of hamburger or stay in extended timeout –to the awful school counselor who dismisses her distress at being bullied.

Mia's difficulties in school - despite having no problems with academics – come to a head in fifth grade when a group of mean girls make it their mission to make her life miserable

This group of mean girls makes fun of her clothes and calls her names. The bullying seems planned, vicious and relentless

They send boys to Mia who pretend to like her and then say things like "Do you think I am stupid enough to like a weirdo?"
When Mia and Francesca talk to the school counselor( who seems like a relic from a couple of centuries ago ) he does everything wrong.

He makes Mia confront the head of the bullies , which of course only makes the cruelty escalate .

 He also suggests that Mia modify her own behavior to "fit in better". He suggests that her first assignment be to "smile more"( implying therefore that being bullied is really her own fault)

I don't want to give too much away but the story has a happy ending

The authors' website is here

I enjoyed reading Delightfully Different by Sue Walker very much and learned several things

The importance of understanding the sensory issues of the kids on our spectrum, the importance of always being on your child's side, the wonderful gifts that our kiddos on the spectrum have. And most of all  of making sure that anti-bullying safeguards are present and that our kids are safe in school

The post has been written  for the wonderful Danette's April edition of Best of Best Bloggers to be published on the 15th

DISCLOSURE: I received no payment for this book except for a free copy from the author- which I will also donate/give away. I will be interviewing the author at a later date 

Beyond Autism Stereotypes

This is the month of Autism awareness.

 I am on Hopeful Parents writing about Autism Steretypes today. If you have a minute join me there

If you dont like to click on links read on

Beyond Autism Stereotypes


"So is it true that to bring on labor, Indian women drink a glass of water in which their MIL has dipped their toe"?H one of R's lead therapists asks me breathlessly one day

She has just returned from adoption training and they are sensitizing them to the different cultures that they may adopt a child.

It's cultural sensitization training.
"Never heard of it?" I smile back "Maybe true in some part of India - India is a huge -it would be like me meeting the Amish people and then assuming that all Westerners avoided technology"

In the past I have been asked about baby throwing, eyeball eating ( thank you Indiana Jones) and elephant ownership( I wish ) .

Here is my problem with stereotypes.

While many are based in truth – none are completely true.

It's the same with Autism stereotypes.

People who don't know much about Autism will meet R will tell us "he does not seem really autistic at all .. he just seems different"

He does not seem ASD – to those that do not know Autism - because he does not fit the media stereotype of either the unhappy child in his own world or the intellectual savant that will help you win at cards

The media specializes in extremes and stereotypes

The reality ? Not so much

April is the month of Autism Awareness.

Many of my kind - Special needs mums and dads are sharing their stories

Each of our stories is different because the way Autism has so many versions
( Even though from a distance we look alike )

Because of the hard work of many organizations- Autism awareness today is different that Autism awareness 10 years ago.

Characters with autism /autistic traits are starting to show in Mainstream media regularly – Max on Parenthood , Lizbeth Salander in the Millenium series, Mr Monk etc

I think as a society most of us are aware of Autism

But I think what we still have a way to go with Autism understanding and acceptance

And in thinking beyond stereotypes

For autistic kids are all unique individuals – just like typically developing kids are

Autistic children are not defined by their autism just as typically developing kids are not defined by their typicalness

And that is what I would like to say in the month of Autism Awareness

The last days of March

Saturday

My plan  is to do the bare minimum on at least one day a week and this day is usually Saturday .

How I love this day  -

The only chores are to  feed R and DH- and keep a basic level of clean

I play with R and read and watch movies with DH

Most of all I make sure that I am not constantly reminding myself of all the things I need to do !

be silent today - I tell her my inner to-do list - I  will listen to you tomorrow

One funny thing that happened today is this

R loves me to make the sounds of various musical instruments.


The violin is a particular favorite - This "game " gets old pretty soon I can tell you

So soon I tell him

"All done musical instruments"

He thinks for a couple of minutes and then starts the song

"Old Mac Donald had some instruments .. ee i ee i o .. and in those instruments he had a ......... ( no prizes for guessing ) violin ...eei ee i o .. With a ( then R pauses and looks at me expectantly )
So of course I make the violin sounds

I am so proud of his craftiness ..I think I will burst !!!

Sunday

Since Saturday is so airy it  basically means that Sundays are crazy busy

We drive back home -

R goes for Play therapy and ABA -

DH and I tackle the cooking - he chops up all the meat and veggies and I do the cooking

This takes me about 4 hours

(as a lot of things that R eats are gluten free and so have to be made from scratch - even convenience foods like Pizza. have to be made from dough

On the plus side ( if you can call it that ) he eats the same 6 -7 things everyday )

Net net Sunday evenings are not times that I can spend much time playing with R .

Plus its raining

So I tell him NO JUMPING TODAY

He gets me out by bargaining and saying "See Playground"  and "See Farm" ( which are his descriptions of our backyard and DH's vegetable and herb patch)

But then as soon as he is outside he clambers on to trampoline in the cold damp rain before I can stop him

 I jump with him in the cold rain forgetting that kitchen that is waiting to be cleaned  

I can most definitely see some Theory of mind developing - for isn't manipulation the first stepping stone on this road

Tuesday, Wed, Thursday : I forget to write down what I did

Friday

 DH has to go to Lowes as he is working on a big - I spend 2 hours playing  with R in his playroom -

I REALLY like his playroom and the big space that we have build there ( DH's idea )

Saturday

In the morning-R is playing with his new foam numbers set - and  I notice that R seems to know how to add and subtract - ( I say appears as I am not sure if he has memorized it from somewhere or whether he really knows - this is a huge challenge with autistic kids as they don't care about showing off )

- but I see him do 5+5 =10 and then 10-5=5

But  does not know how to multiply correctly as he writes : 3 times 3 = 12

The ASA society has set up a  time for kids with Special needs to bowl at the University

I am a little ambivalent about it as I think the balls will be too heavy for R but DH persuades me to go as R has been doing the Wii Sports Bowling ( with minimal skill ) for many weekends.

This is the thing with R - for must people Wii is the simulation of sports  - For R - real sports are  the simulation of the Wii

We go we have so much fun

Next to us another young boy is playing . He has the young sweet air that many special needs kiddos do -

When he has a "strike " - I squeal and say "You are awesome"

He says " I am not awesome , I am Barney"

For the rest of the time - he high fives me every time he has a great throw.

He reminds me each time to look at him while he is bowling

The way he chooses lighter balls for R and hands them to me - makes me want to cry - so moved am I by his  matter-of-fact kindness

I just love Auties. I really do

And I often am reminded how the way I look at persons with disability has changed - thanks to R .

Its raining heavily when we reach the cabin and we literally don't leave the cabin till Sunday afternoon

DH works on his home improvement project of installing a shower and I spend a day of slothfulness

Its very interesting that while R does not seem to notice what DH is doing ( installing water pipes ) - I later notice that he has found a game on Disney where he is installing water pipes .

I often notice that R tries to copy what DH does - he tried to wear flip flops , he sits in DH's chair every chance he gets


Sunday

We eat a large amount of mangoes for breakfast and R and I play with his letters

Sunday afternoon and evening are an orgy of chores

I give R a written schedule as I am traveling for the next three days

He looks at it sadly - but its always good to tell him when I will be going and when I will return

Wednesday night late

When I come home - I and Dh watch Parenthood and I drink Baileys.

Gosh its good to be home

R is already asleep - but when he wakes up at 3 am to come to our bed - he is so ecstatic to see me that he spends 3am to 5 am hugging me and stroking my hair

He is just so sweet - DH and I often talk about how we won the kid lottery

Thursday morning

R has been awake till 5 and when the alarm goes off he is fast asleep

Since DH is feeling unwell and R is too tired - I let him sleep for a couple of hours and take him to school myself

I have to sign his "tardy" slip and do the walk of shame !!( he has three therapy sessions after school today - Speech, pretend play and musical gymnastics - so I do think the extra sleep was well worth it - but I am quelled by the stern look of the lady at the school's reception and feel 6 years old myself )

I meet his teacher who talks of mainstreaming him next year

I have MANY concerns about this.

He is so easily distracted - how will he do any independent work ?

But DH and I have agreed that this mainstreaming be the better option as R hates being in his Special needs class - Several of the kids are very noisy in there ( they are lovely kids and not ill mannered or anything like that -  just some of the kids have stims and a couple get distressed easily and frequently )

I adore his Special needs teacher- Mrs S- she says that she thinks R is a brilliant child but that he often has a hard time paying attention - because he is too many things he is interested in.

"Its like the Internet getting slow because there are too many people on it "

This maybe one of the best description of ADD in ASD I have heard !!

I tell her about mine and DH's worry about whether he will be able to do independent work in a mainstream class and she reminds me that neurotypical kids also need reminders - she is right even though its a completely different degree
R is so delighted to have me home that he flings himself on me - every 10 minutes as he is overcome by love

 Friday

DH and R come to pick me up from the office

In the Parking lot , R pulls me down to get his face close to mine and kisses my cheeks first one side and then the other in the enchanting way he has

A colleague's husband pulls up in his truck

He says "you are a very lucky mother "

"I know " I reply