R is for resilience

Voices are spilling out of the therapy room

I pause in the middle of chopping a pepper in the kitchen and strain to listen carefully

A baby voice says .. wun,too,thee,fow,fyf,sis,sheven,aight,nain,then

Wild cheering follows

"You did it.. R you did it" !!! yells H ( therapist)
Next comes the sound of a small triumphant giggling child being flung into the air by an ecstatic therapist

A child reciting numbers would be humdrum in most houses

Not in this house

In this house its something that makes you turn cartwheels and thank God

The words are coming slowly and surely.

Its almost exactly 3 years ago when R started regressing

We had such a close relationship always - R was nursed, hugged, kissed, loved carried everywhere, slept with us.

Though each night A and I slept like two protective brackets around this much loved child, we did not realize how profoundly things were changing for him in the summer of 2006

And yet 3 years later things that were lost are returning.

In fact,many unexpected gifts have come from Autism.

H hesitates on the doorway and then turns around and says " I almost cried today"

Me too

R is for resilience

Work hard to play

Today we were back at the psychologist in my lunch break . We were trying to play with R and it was an UPHILL battle .

He did not want to give up control at ALL . So he would make a sequence of numbers and we would try to put ourselves in that sequence so if he lined up the blocks which said 1, 2, 3 we would put 3 objects next to 3 and so on

It took us SEVERAL tries to get into the game and it was like I said UPHILL battle

We did a birthday game for dolly which he was kind of sort of interested in. A tickle game which he LOVED – but it was one way .. us tickling him

Last week I was out of town and the week before that I did not play much.

It was great to go to her as it made me realize that we need to devote more time to play more with R.his deficits really come into focus while playing and its SUCH a great reality check for me- AT home in familiar environemnts these deficits are not that obvious

We need to work hard at play

In Sharp Focus

S is talking of another child she works with as she walks into R's therapy room ( really its his nursery with a table and a chair in the center and a Rubbermaid box of therapy materials )

" T is a darling" she says " His only other problem besides being blind is to be severely autistic "

This is the kind of blithe understatement you will only hear in the parallel universe in which us special needs parents live
She is right in a way .. There are many things that T probably CAN do and its better to focus on his different abilities than on his disability really

Two years ago, when we learned that R had Autism, if someone had asked what my most ambitious dream for R was .

I would have said that my dream was that R be indistinguishable from his neurotypical peers.

I knew so little when I wished this abysmal goal

One because R is unique - to only hope for him to be "just like everybody else " is to not to be fair to him ( or any child ) . It would be to wipe out everything that makes him special

Last night we had dinner with some friends. They have two young girls – 3 and 1 . We were having dinner together ( potluck pizza – ie they ordered a pizza and so did we ) And the three kids were playing in their family room

Like many special needs mommy we are automatically watching kids through reflective eyes.

I saw the little one year old constantly watch our mouths move. (is it wonder that language comes suddenly and surprisingly to neurotypical kids – when they spend all their waking hours watching grownups talk )

I saw the 3 year old constantly try to get our attention, dancing with a scarf, trying to adorn me and her mommy with it so

While R found a block of numbers and wrote this – 625371(seems random but look a little carefully and you will see what it means )

R kissed everybody ( all the women actually – the two girls and their mommy- he just prefers to say Hi to men and will sometimes hug them ) and even played a little with the baby ( ie she tried to engage him and he responded )

So its not that R was not affectionate or social ( in fact he kept coming back to me to kiss and hug me from time to time – really I am yet to meet a more loving child )

Or that the girls were not smart – they actually seem very smart sweet kids

But, its as though while all three are watching the same picture - what the two girls perceive as the background and what is the main picture- is the opposite of what R sees in that picture

There is no absence of love in R, as there is no absence of intellect in the girls .

Neither's interpretation is wrong per se - Its just that they are paying attention to different things

But what they see in the picture is because of who they are. And if we keep telling them that this is wrong – we will not only ruin their self image- they will also never see the picture the way they were meant to.

Yet we need to make sure they see the whole picture too. Its such a delicate balancing act

Like a said 2 years ago – I had a lot to learn – when I wished that R would be just like everybody else .

My vision is in much sharper focus now.

I wish simply for Self reliance ,Happiness and Love

S predicts for R "I think he will be fine.. he is so bright you know .. He will probably be one of those weird people who only have a few friends but do something good"


And that will be awesome

 

 

 

 

 

We are more alike than different

As I sat on the plane waiting for my flight to take off from Atlanta, I catch scraps of conversations from beind me . This 60' something couple is returning from a Canada vacation. They have struck up a friendship with a young man in fatigues returning from a tour of duty .

The woman is telling the soldier " Canada is soooo different from here … over there when you ask for tea they give you hot tea". The soldier is agreeing with her - and saying where he has returned from is very different as well

I suddenly realize that I think the opposite is true

People are actually very alike- even when they seem very different.

Autistic children's behavior is so over pathologized sometimes.
A behavior that seems so strange is so "normal " for a person with a different sensory profile.But can easily be interpreted as a sign of being a completely different species. Oversensitivity to touch is interpreted as an absence of feeling, an overwhlemed meltdown interpreted as an ill mannered child whoisalwaysspoilingthingsforeverybody and so on

The Delta Magazine I flip through has already been well thumbed by two Siblings on some earlier flight - Grant and Rachel

Like all children in the world, these two have not been able to resist the urge to decorate the pictures.–bare necks have had necklaces adorned on them , moustaches have been drawn on the men, glasses have been created, feature have been outlined . The image of James Bond on Quantum of Solace has been turned into a devilish creature complete with horns and blood dripping from his eyes

Like our ancestors from the past – Grant has wanted to show that he was here.

He has marked his flight path on the maps showing the Delta routes – marked it so deeply in fact with a pen that the paper is quite worn out.

Grant is traveling from Fort Lauderdale to Des Moines, Iowa with a stop over in Atlanta

He is also clearly a Sponge Bob fan – who he has drawn and shown as traveling from South Africa all the way to Atlanta in a plane ( traveling at high speed as demonstrated by the many billows of smoke emanating )

His sister has written on the top of the page of Grant's careful drawings - Grant is a Dork

Being a dork is a BIG insult I think as she has also designed something like this DORKSTAMP that she has placed on the forehead of many of the pictures

Grant has had the last word however .

He has crossed out Dork and put in "Good Kid"

Bullies are not the sole burden for Autistic children. Grant is facing them, as will R

And what I want, is not to protect R from people who will call him a Dork (or worse )

But nurture my son , like Grant's mom has nurtured him clearly.

So R knows and can say back.

R is not a Dork. R is a good kid.

 

 

I met an Adult Autistic Person

Last week I met my first adult Autistic person

She was lovely . In her late 50's or 60's. Very warm and very sweet. She has a son ( who has Autism also ) and a grandson who also has Autism( through her daughter who does not have ASD) .

She is very very talented and can clearly play music by the ear. She had great ideas of how to teach music. Her apartment (very close to my office )was neat and homey too . Clearly she is hig functioning. There are a couple of oddities like she kept referring to me by my last name and got my phone numbers jumbled . Bue I really really liked her

She was almost Painfully honest. She charges $ 8 for a session ( if you are mommy of a special needs kiddo you know that is just peanuts )

And her first lesson was free ( she wants to make sure that she she does not overcharge "because the first lesson she cannot really teach anything… its just to get to know the child ")

It just broke my heart

She thought if she did not teach a tune the first day then we were not getting our money's worth !!!!

Her eagerness to please and her innocence were just too much for me that day .

I have such a tenderness for Autistic people. I love them really.

She mentioned that life had been very hard as she just could not do Maths and History and people were very mean.

R did not do too well in the lesson though as she was very in-his –face. I could see just the kind of vicious cycle that may have played over and over again in many a spectrum Person's life

Trying to woo someone without knowing how to , being rejected , feel hurt , recover , try again and so on

I am determined to break the cycle in this one relationship with my son though. I am determined that we will set this one up for success

So I wrote to her this email ( I thinking emails are better than phone calls as they are less stressful )

It was great meeting you last week . We are so glad we found you .You are clearly very talented and we look forward to a long term relationship with you!

Our goal is to develop a long lasting love for music in R. Its important he enjoy it

 

Here are a few suggestions we had based on our son's sensory profile .

I hope you dont mind us making them. But this is what we would do if we were in your place

 

In this Monday's session I would suggest .you simply play some tunes on the piano yourself and just chat with A( Dad ) without really interacting much with R ( your student )

 

Here are some tunes he loves

 

• Twinkle Twinkle
  
• The Wheel on the Bus
  
• Row Row Row your boat
  
• The Blue Danube
  
• Vivaldi's Spring
  
• Pretty much anything Mozart
  
• The Nutcracker Ballet
  
• Veggie Tale theme song
  

 

He gets overwhelmed in new situations and needs some time ( maybe even2-3 sessions) when he simply adjusts to the room and gets comfortable with it. While this may seem a waste -its a very good investment for us.

I would talk very less to him . I would let him approach you and I would be responsive in a gentle way - to any approach from him I would speak very softly and slowly and use few words - like instead of saying " R you want to play the piano" I would say "Play Piano? "

See you tomorrow ( I - Kajoli ( mom ) wont be there, A ( Dad ) will bring him )

 

Take care

Kajoli

 

Anyway here is the moral of the story – Our job as parents is not just to focus on speech and academics but also on life skills and most important a sense of self and self worth

Follow the child’s lead

This is the first principle of Floortime – It is a profoundly important principle.

R is a different child when he is doing the things he is interested in. When he is not – like when I am doing a crafts activity with him all his dis-ability comes into focus – the attention deficit ( in Autieslike R - I wonder if its really an ADHD an inability to pay attention in general or a lack of attention to things that bore them ) , the fine motor skills, the general lack of with-itness and spaciness !

But start with things that he likes or that make him feel good and he is transformed-

Gone are the fine motor skills when he cruises through the internet – double clicking like a pro.

Gone is the attention deficit when he is playing Patience!( I realized he has memorized the Patience on Starfall as he did it without error in one go again – I could see the computer screen from the bathroom window while getting dressed )

This weekend I was feeling a less inclined to be serious about doing things like Pretend Play( Basically things that I am pushing and that R has little interest in )

But I focused on things that R loves – Sensory Stuff ( tight squeezes, massages , turning him upside down, tickling, rolling around in the bed, pillow sandwich, Wilbarger brushing )

And the only tow Floortime Principles I followed are – "Follow the child's lead" and "back and forth interactions" and opening and closing many circles of communication

It was a simply lovely weekend even though it rained almost incessantly and it was hard to go outside anywhere. But I spend most of it feeling entranced in the spell of this special child .

This child is magic!

( Except for when he is a monster like he was last night when he would not sleep )

He was also very verbal for him using the few words he has spontaneously like

1. UP ( to be cuddled or to be at the height suitable to get to Junior Mints or the Remote )
   
2. PISSA ( pizza )
   
3. BINTUH ( mint )
   
4. Shee ( sleep – basically come and lie down with me – he had no therapy Saturday morning and this is all we did – lie down in all the different beds )
   
5. Bos Muth( bonus material – from his Numbers DVD of Baby Einstein – He STILL loves some of these – one of my friends calls them "Baby Autism DVD's and she could well be right LOL
   
6. Spite( Sprite)
   
7. Ssspuh ( to listen to the numbers in Spanish and then Fuhhh in French )
   
8. Boos Coos ( Blues Clues)
   
9. EH tuh ( veggie Tales )
   
10. Muh Muh ( mom )
    
11. Puh Dish ( playhouse Disney on the computer )
    

 

Please be kind, stranger

Last evening a ball rolled down to the very end of our backyard and I went down there to retrieve it and came face to face with our neighbor ( of 5 years but we have never met as our backyards are big and back to back to each other )

I said hi and introduced myself

She said " I see your son and you out here a lot.. he is soo adorable"

Me : Thank you .. we think he is so cute to

She : you spend a lot of time teaching your son don't you

Me : He has Autism so I try to play with him as much as I can

She: Autism ? Really? I never would have guessed .. well keep doing what you are doing .. he seems to be doing so well

Such are the simple acts of kindness that can fill up the heart of us moms

Or an email from a friend that we spend the weekend with

"I really miss R's presence in the house. He brought so much love! I can't believe that you guys were over only for a weekend."

 

 

Sensory Tuesday

Monday evening went by before I knew it
So today I had a plan of action
R is a sensory craver - specifically the proprioceptive and vestibular - ( here is the lingo that has become so familiar as an autie's mother )
The idea is to help R understand where his body is in space. ( Imagine how insecure you woud feel if you were to say close your eyes and not know where your hands are )
The idea behind Sensory activties as a tool is this
If a child craves sensory input and you give them the sensory input this helps them to organize themselves better ( this is true BTW of kids who are typically developing as well I think )
Moreover since they are not spending all their attention on craving something that they are not getting they are able t regulate themslves and pay attention to the rest of the world
Also while the lingo is different the activities are very familiar and part of every day- you just do them deliberately and purposefully
So today I did for him
Foot Massages
Tight hugs
Swinging
Lying in the hammock with him
Bathtub into a small ball pit
Baby Burrito ( wrap towel around child after bath and hold them close to you - One of my son's favorite things)
Lotion Massage
Joint compressions
I really thought I made good use of the evening even though I was a little late coming back from work and he was a little distracted and weepy

Lazy Sunny days

Simply lovely weekend
Sunshine spilled everywhere and we spend a lot of time outside playing
There is something about being outside that is so calming and regulating for my son( while watching TV, having the remote for the TV while watching a show has the opposite effect – It really disregulates him- Computer games do not seem to have the same effect though ) .
Another thing that R does nowadays is play well independently .. he is really interested in exploring things around him
I really struggle with what I should do at these moments. Its so nice to see him enjoy something by himself and also not do anything but Floortime Principles would say that one should do what one can to turn each interaction into something more
Saturday morning was spend cooking – DH went off to play golf ( he had done all the food prep last night though – all the grocery shopping and also all the chopping of veggies and meat )
By 12.30 on Saturday I had done this

And cleaned up the kitchen
By 1 had remembered that I had forgotten to make anything potato based ( Dh’s love ) and so I made this

While DS ate breakfast then lunch and played on the computer coming in from time to time to the kitchen to demand cuddles and lollipops and Junior Mints

In the evening DH and I went for a dinner party while DS stayed with his therapist who also babysits . She says he ran around the house saying Mama after he heard the garage door come down .. Its amazing how he is abale to use the few words he has when there is a lot of emotion which really is the whole thing of Floortime . Harness the emotion and developmental progress will come based on that
A large chunk of Sunday was spent lolling about in bed – something that DS simply adores and then lolling about outside

Regressions

One of the most horrifying experiences as a parent to watch your child regress.

Today in his Speech therapy in the evening ( he was crying as I he did not get cuddle time with me before his therapy )- I had him on my lap and his speech therapist was getting him to say the word "fish "
I remembered all over again that it was the last word to go when he regressed that horrible spring, summer of 2006
I so detest seeing my little boy in any kind of pain. The thing that bothers me most about his regression that year is how scary it must have been for him. If a regression is so scary to me from the outside.. how horrible must it have been for him
I hope that I was very very good, patient and kind to him.
Still when I look back that year of 2006 and how he changed in so many ways after the repeated Ear infections/antibiotics /vaccinations etc that dreadful year
It also occurs to me that perhaps was also a different track right from birth - he never said Mama for instance, he also never pointed -

This lack of pointing I learned later is one of the key indicators of Autism. He got glasses at 14 months. I wonder how not being able to see impacted his path of development. Still it cannot have been too huge .. otherwise all blind kids would be autistic
Strangely enough after having spend some part of the post diagnosis period mourning and feeling guilty -I am also learning to rejoice in the sheer beauty of R's unique and gorgeous mind and heart
After all - he may have lost the word fish .. but almost 3 years later.. he is getting it back again

Weary wednesday and throwaway therapy thursday

Kind of a lumpy two days
Day 3 and 4 of Nystatin clearly indicate that whatever the reason for a very vocal Tuesday .. it was not Nystatin
Today in the evening the speech therapist came early ( at the same time I did )
So R got n snuggles with me .. he wept heartbreakingly through all his therapy
Even when I went to the therapy room and sat with him on my lap he was not conosoled and kept mewling
Yesterday he was kind of alooof with me and all about the computer .. today he was all cling and snuggle

Manic monday and Tepid Tuesday

MONDAY WAS MANIC
So Monday we started with Nystatin
For whatever reason R was sooo hyper - he did not sleep till about 2 - his tummy was hurting I think
TUESDAY WAS TEPID
Anyway I had to spend the whole Tuesday looking at "Segmentation solutions"basically giant sets of tables of data. Only caffeiene- thank you Peet Coffee for making this mega strong Major Dickinson's Blend- kept me alive. The data was beautiful but boy was I tired
Anyway when I came home and this was the second day of Nystatin . it was like a sort of switch had come on- perhaps a coincidence - but R was really using the few words that he has - BED, DUM ( Dums Dums ) UP, MINT ( junior Mints ) SHEE ( for Sheep )
I am writing his words in caps lock because just to write them in lower case does not communicate the tone( he does not yell and when he babbles its the most enchanting of sounds, but when he uses words to ask for things they are .. I dont know what they are ,, but they cannot be written in the lower case )
Anway we went to JC Penney in the evening to buy me a new handbag .. and he got a little stimmy there but for the most part he was VERY purposeful and focused all evning
Could 2 days of yeast medicine make a difference
I really dont know but I will be watching carefully the next few days

Serene Sunday

Sunday was so much better as I had only the daily living chores and no major work.
R'a very unusual way of being is so apparent these days
This was sooo hard
I tried to bake cookies with him.( Namaste Foods Gluten Free cookies ) I wrote down the recipe - in a few simple sentences
Take Flour
Add 1/4 cup oil
Add 1 tbsp water
Add 1 egg
Stir together
etc
and laid out all the ingredients
I had even brought him a cute apron the other day ( dollar store ) and put it on him
Boy did he participate reluctantly
I literally had to FORCE him which took out all the fun of it. He was sooo squirmy and disinterested
HOWEVER THIS WAS SO EASY
in the morning when the three of us were snuggling in bed and exchanging compliments and simpering , DH was adding up all the things on R's face - 2 eyes+ 2 ears + 2 lips+ 1 nose + 1 chin =
and later I saw that R had opened some sort of website on starfall I think where he was adding
8+4= and he chose 12 easily
Addition is so easy at 4 ?????
Why are some things so easy and some things so unexpectedly hard ?
I am feeling quite down and out about the speech too ! It is coming incredibly slowly and not very well
Anyway Sunday was overall ogood except that R wandered away in Target to go to the gift registry computer - computers are an irresistable magnet to him
WE had a great dinner( homemade pizza - dough and all - fresh basil - amazing mozarella ) with two lovey freinds we have - they have a new baby and R was so jealous when I picked her up
Stressful week ahead ( what's new ???) But I managed to not think of work not all week ( - a major achievement )

Weekend update - Saturday

Stressful Saturday - I was trying to get together with one of my friends who has been through surgery and I wanted to take her some food . So three of us got together at her place and each of us bought a Pizza and we had a Pizza party . I also wanted to get her an additional meal so I had made a big batch of Minestrone SOup
This is what I made on Saturday- this will be most of the food for the week. DH and I usually do lunch together a couple of times a week and that ( plus it always seems lke we have more than enough leftovers for an additional meal - sometimes more )

1.Italian Minestrone Soup with Rolls
2. Chicken Tortilla soup and Corn Bread
3. R's Chicken Veggie Rice purees (
4. R's Pizza ( Gluten Free )
5. Cauliflower Stirfry with Raita and Rotis( Indian Tortillas)
6.Roasted Potatoes - with rice and Dal
7. Green Beans Curry with Rice

Anyway after I spend all morning and afternoon cooking and halfheartedly playing with R etc -
I had to go out in the evenng
I really was feeling stressed about that becasue I got NO floortime done
I really cannot do more than one external activity a week