Saturday, January 31, 2009
His theory made so much sense ( plus he is yummy looking and has a lovely British accent:-) )
Anyway he says - Play from your strengths and work around your weaknesses
He belives the fixation with fixing your weakness can only protect you from failure not lead you to success.
This rings so true of our general philosophy around raising R as well.
We plan to work on finding his passion ( right now its the words , computers ) and finding ways to manage all the challenges he has with the social world.
Its so important I think for Autistic children to be encouraged to pursue the things that they are good at.
If every minute of R's day is spend in trying to do things that he doesn't easily get like ABA or langauge ( mind you these skills are really important ) and none of his time is spend on the things he loves .. what a sad life it would be for him
Like the author of "Not Even Wrong" said " thr trouble with putting a square peg in a round hole is not just that it does not fit but also that in doing so you may break the square peg
I think a day filled with ABA ... the 40 hours per week we( indeed most parents of Autisic children ) were encouraged to pursue would be for me like school days that would be filled with period after period of calculus and chemistry and no time for Biology or Literature ( my loves )
Temple Grandin and Bill Stillman both talk about how building on a child's strength like Math Music etc is critical and provides a reservoir of self esteem .. in fact a sense of self that is most therapeutic
Till DH explained to him that he was also going to be going with mommy
That cheered him up pronto :-)
Anyway it was a hectic trip and I am glad to be home though also not looking forward to the awful week that is to follow
My heart bleeds for old people who are forced to move to nursing homes leaving behind all the things
I supposed one should not be attached to material things
Wednesday, January 28, 2009
We celebrated with Lunch date and Quantum of Solace ( it was playing at the disgusting dollar theater but I really wanted to see it so we did ) It wasgreat fun
Anyway apart from a lot of tickling and bouncing on the big exercise ball with him on my lap I have not done much
I am off for some work in a close by town tomorrow - and R and A are coming with me - while i do fell bad that he is missing two days of school and therapy .. I cannot help but feel that its okay
we all need a break from time and time
And he is still not all over the stimmy stim stim phase
Anyway wanted to share two funny pics
One is a word that looked so weird till I realised it was the vowels ( starfall.com thank you - R loves this site )
He is also into making these foam numbers and he will go like this 10 then throw it away to 20 ,then 30 , then the same for 100's then the same for the 1000 ( 1000, 2000, 3000) then for 10000 and he would have actually gone on to a million but we ran out of zeros
he als wrote 1love my lips ( veggie tales song )
Monday, January 26, 2009
Preparation: 1 to 5 minutes
*What is your child’s mood and energy level?
*What is your mood and energy level?
*Remind yourself of your child’s sensory preferences to help him find his sensory “comfort zone” during your floor time session.
*Is she more attentive to high or low pitched noises?
*What kinds of textures does he like to touch and be touched by?
*What kind of visual experiences attract her?
*What kind of movement is stimulating, soothing?
*What kinds of oral-motor activity organize his behavior?
*What is the child doing?
* How can I join in?
Interaction: 20 to 25 minutes
*Position yourself in front of your child.
*Use gestures, tone of voice, and body language to accentuate the emotion in what you say and do. Be animated.
*Talk less. Find ways to play that don't require words.
*When you do talk during play sessions, use language that is at your child's developmental level. If your child speaks in 2-3 word utterances, limit your own speech to 3-4 word utterances.
* Do less. To avoid overwhelming the child or dominating the activity, do only as much as the child is doing.
* Imitate the child’s actions.
* Follow the child’s lead regarding the “topic” for play. You can choose the topic at other times, but during floor time, let the child choose.
Fostering attention, engagement, intimacy
Follow the child’s lead and join him. It does not matter what you do together as long as he initiates the move.
Treat everything your child does as intentional and purposeful. Attach meaning to (seemingly) meaningless behavior.
Join in perseverative play.
Do not interrupt or change the subject as long as child is interacting
Pursue pleasure over other behaviors; do not interrupt any pleasurable experience.
Creating and sustaining interaction in the face of avoidance Do not treat avoidance or “no” as rejection; persist in your pursuit.
Insist on a response—ANY response (not just the one you are hoping for).
Play dumb or make the wrong move to provoke or sustain an interaction.
Playfully interfere with what the child is doing.
Block escape routes, and turn the child’s escape efforts into an interaction
Saturday, January 24, 2009
He dipped his finger in the water to check whether it was hot or not before getting in the bath
He blew bubbles back and forth with me
And when he was celaning up all the tomatoes that he had thrown out from the veggie basket - he put them back in a sensible way - collected as many as he could and then put them in the basket rather than one by one
I am always so glad to see evidence of executive function progress
Friday, January 23, 2009
Today I was feeling really whipped from work and so I ended up watching TV instead of Floortime ( along with all he chores of daily living - dinner, laundry bthtime etc )
IN the bath however we had a really nice time blowing bubbles back and forth ..he is loving this
Its a bonanza
We really were not able to play outside becasue his Speech therapy only finished at 5.30
His speechie and I did some sensory motor play with him - roll in the rug - swing in the rug ( activities he just LOVES ) and will ask for more songs for ( example he will make a sign for "wheels on the bus ".. so I can swing him while singing it and he will rompt me with the beginning letter of all the paragraphs )
DId this with Dad as well - again lots of engagement .. lots of back and forth circles of communication
And even though I gave him some computer time .. he really was hard to get away from the computer in the playroom
This is one of the reasons why being outside is just so awesome .. I dont have to fight with the screen seductress
As is bath time .. we have a little heater on the wall of the bath tub which I turn on .. makes the room really warm and we have a little boombox and really can easily get an hour of good joint attention and back and forth circles cooking in the bath
Sensory motor play worked great .. as did BUBBLES
R blew his first bubbles yesterday
His Speechie also said that she thinks Apraxia is his only challenge ( it isnt but its sweet of her to think so )
Thursday, January 22, 2009
I am reminding myself here of the two important principles of Floortime right now
First , The only mistake is not to show up
Second, WHen you are having trouble getting long back and forth interactions- start at the basics of joyful engagement
The reason - you guessed it friends ..I am ahving trouble gettting back and forth interactions going
Yesterday in the play room I set the stage a little bit to be more attractive than computer by
Asking DH to let R play to his heart's content on the computer between the time he cmes back from school and he is done with snack - 4.00
Till I am back and done with my snack - 4.45
from 4.45 to 5.15 we played outside ( bitterly cold ) and all he wanted to do was run around or nurse ( hell to the no LOL )
5.15-530 - snuggles
5.30 - 6.30 - ABA
6.30 - 7.00 - starfall.com ( computer and I let him becasue atleast its making words )
7.- 8 flooritme in the playroom - Low quality he signed for the computer a few times - played with preten food a little bit ( with his back tunred towards me mind you )- Then he went to stack circles and I tried to be part of it by handing the cirlces to stack - I tried a little with the puppets got no interesnt and simply worked on joyful engagement - - got Some Tchaikovsky playing on the cd and rough housed on the floor. jumped on the trampoline holding hands and swung him on the indoor swing a little
8- 9.0 - dinner and book
9-10 - bath -I NEED to set the stage better for this byt aking out the numbers and letters from eht bath tub - relacing them with some aquirt toys ( he is showing alot of itnerest in these recently ) - lighting some nice smelling candles and maybe playing with the bath puppets
STILL - I did show up and he did get atleast 90 minutes of Floortime
I did continue and not give up and lapse in front of our various screens - me watching some DVRed Detective show and Rohan playing a computer game
Plus he really seems to have accepted that he no longer has the remote
a child with executive dysfunction spending so much time ffwding and skipping to pleasurable parts of the DVD seems really the worst thing to do
Tuesday, January 20, 2009
Thank you Danette for the lovely blog award.. what a lovely surprise
Today we went to see the Genetics doctor. I had gone to a Floortime conference in DC in November and a doctor from Kennedy Krieger had a made a really interesting presentation.
Basically he talked about how you no longer needed to do a muscle biopsy to diagnose mitochondrial dysfunction. You could now diagnose it through an outpatient fasting blood test.
Also that there was a treatment for it.
These were the two main reasons why DH and I had never pursued this –( the test would be painful for R and we did not know if we would do anything different )
Anyway this had made us want to atleast talk to a Genetics person .
We did .
She did take a cursory look at the presentation but really wasnt that interested
Her opinion was that kiddos with mitochondrial disorders will present in some other prominent things as well - exhasution, small illnesses becoming major illnesses, and also MR - she did not think we would get a high yeild going down the paths of testing but was open if we wanted too
I cannot tell you how relieved I am not to go down the path of more blood work- atleast for now
She also said that if we ever get an MRI done or an EEG done we should let her know that then she woudl draw some blood while R was under sedation. I appreciated this very much and also at the fact that she did not rush us
And while I appreciated very much her desire to sympathise -- it was really annoying to me as well. Her saying things like " it must be all the more frustrating for you to know that he is so bright that he can read but still cannot communicate" ( Intriguing, fascinating - yes but its NOT frustrating - at least that is not my main feeling regarding this- I am THRILLED he can read- and he does communicate a lot )
Her hangdog expressions while saying things like " has he made any progress in the past 2 years?" Ughhhhhhhhhhhhhhhhhhhhhhhhhhhhh
It was clear to me that she was expecting a Poor me attitude from us and even in the face of us looking and acting cheerful and optimistic - she could not let go of that
One big truth that I am coming to realise is that that the person who has the most puzzle pices in their hand when it comes to their autistic child is the parent.
The specialists are great at their specialties but not at the whole view of the child ( one reason I like R's psychologist -0 Dr Neece so much - she gets the whole kid )
While leaving the office I overheard the receptionist giving an appointment for a child with Fetal Alcohol Syndrome
Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr-I cant beleinve the moms who go on alchol binges when they are pregnant
Wednesday, January 14, 2009
What should I do ?
R is in a particularly stimmy and hard to engage period – Started off with the start of the year with school starting. While he is just as loving as ever – he is very hard to engage in long back and forth circles of communication.
All he wants to do is nurse( another sign of stress ) , watch TV and play on the computer . Many reasons of course
- School re-starting
- Houseguests 2 weeks ago
- My back at work
- All of us are fighting a cold
- Reduced sensory diet – as its too cold to go outside
- Less Floortime – as I have been a lump
- Too much TV time over the break
I honestly think Number 4 Is the biggest reason . even his teacher mentioned that he is spacey and not alert these days
And of course since I am in a sickness fighting mode .. I am pretty tired as well
Tuesday, January 13, 2009
And I don't mean that in the way Jenny McCarthy does when she talks about the warrior moms
Today one of my friends send me the blog of a young woman (http://www.caringbridge.org/visit/loriej) who is dying of cancer. She is beautiful, brave and has two young kids, a really nice husband, faith in god.
And she is still dying
This has shaken the gray fog that has been clouding my heart from over me. All my worries – R's constant stimminess these days, work woes , those mysterious 10 pounds – all seem problems.. but simply in the form of challenges . Not the insurmountable obstacles on my path to being happy
I vowed that atleast today .. I will not spend one minute whining and feeling bad about all the small stuff.
Because the big stuff .., its all there
Thank you universe for the blessings in my life
Friday, January 9, 2009
For some reason or another I am profoundly stressed now . I feel overworked, underachieving . I am having some trouble sleeping. I have been up since 3 and I have a full day of stressful meetings ahead of me
I am working on shaking this gray cloud from over me
In terms of Floortime – I am finally getting back into action!
For Christmas we bought the Fisher Price Loving Family Dollhouse - I am having to work harder at getting proper circles of communication going because R has had too much screen time ( computer and TV ) over the past month for one reason or another .
I tried to make it meaningful to him – by making the baby nurse on the mommy (R's favorite thing in the world ) – he did make mommy and daddy sit on the patio chair and he also loved making them climb up to the upstairs bedroom.
I see this as an excuse to buy some furniture for my dollhouse LOL
So we started back up with our psychologist. She has had some training in Floortime – but frankly admits that I know more than her. This is one of the reasons I like her lots – she is very no-nonsense. None of the fake puffery I see in many consultants and she says a lot of things which are very very astute
She said she sees her role as simply guiding us and encouraging us – being a sort of professional sounding board.
I like that
She was the one who when I saw her almost 19 months ago at the start of our Autism journey. She summed up R's strengths and weaknesses pretty succinctly and said two things that have really turned out to be true
- R likes numbers and letters etc because they are constant things in an ever changing world. ( I further believe that R uses these constants to tune out the changes – much less now than before but he does do it )
- She also said R would benefit greatly from our positive and worry free attitude. This has turned out to be unbelievably true. Inspite of lackluster parent therapy ( in terms of sheer tonnage ) R has come a long way
She also felt she saw a lot of positive change in R. Specifically
- Much more interest in everything – playing with all the toys she had – somewhat appropriately ( if very immaturely ) example she had a rabbit connected an electronic switch – which she would press and the rabbit would jump – R was very interested in trying to figure out how she was making him ( the rabbit ) do it rather than play with the rabbit. Stuffed animals mean very little to him. But he did play with a puzzle and with her dolls etc
- She also said she saw a much calmer demenour ( this is a pet peeve of mine – most people make such a big deal about stimming – I really think – simply because it looks odd even abnormal and different – and see the absence of stimming as a profound change rather than simply less stress or better sensory organization )
Anyway here is our homework
- Pretend play
- Use hyperlexia to go to action words and categorize thing- example- lay our flash cards and say" what do we eat ?"
- Get a mother's helper to play with him – maybe an 11 year old ( gradually keep reducing the age of the person whom he interacts with )
Monday, January 5, 2009
Its sooo true for the mom of an autie as well . Its very easy for us autie moms to put ourselves last. Indeed we are told over and over again - that if we were to give our child all the hours of "engagement"possibe they would in fact stp having a diabilty
What a burden this is.
I question this hypthesis now- becasue the corollary which is insidiously whispered in our ears is this "if they dont recover its your fault" This while inspiring and energising at some level - is pure poison at another level.
There are many paths into Autismland and many different versions of Autism Land. And some will leave this land with/without work , and some wont and some wont need/want to.
Anyway the point I am making is that our breed -- autie moms - needs to quit being so hard on ourselves . Parent therapy constant engagement , special diets make our life so much harder. The last thing we need is that nagging guilty voice - we all know what I am talking about
The days when I am depleted are so hard on my son. This past week has been wonderful with some friends visiting us from another more carefree time. But it was also extraordinarily busy
This weekend was another excruciating litany of chores
I even found myself snapping and yelling at R yesterday . So ashamed. He just looked so sad
He woke up with a fever.
Anyway today evening I just lounged with R on the couch and we were both happy as bugs. R had fever and I was dead tired ( did not sleep a wink last night )
But we were still happy
Wishing all of you lots of oxygen in your life