Saturday, February 28, 2009

Free Hanen - fingers crossed

They MAY be doing a free Hanen training at R's school ( infortunately only in Fall which is two seasons away ) i have the book "More than words'and its a really nice book but I want the more hands on training . Plus the person who would be teaching the program really seems with it
Anyway I am keeping my fingers crossed. They would be offering the Hanen training called "it takes two to talk"( ITTTT) but really that is for the kids with challenges like Downs.. the videos they showed had very engaged kids - who basically just seemed to have speech challenges.
Not like ASD kids who have SOOO Many more sensory distraction challenges goingon
So in the ITTTT videos the kids there was one video on a little girl with Downs who was just so perfectly in sync with her mom - who was doing the Hanen with her. They had back and forth circles of communication going on so effortlessly
The vidoes in the "More than words"( MTW) had kids with ASD - even getting their full attention required so much work .
Clearly the MTW program is better suited to R but for that we will have to wait

( She wondered aloud whether R has ADD - her own son does - also or not - ughhh it seems like every year we collect a new A - at 2 it was Autism, at 3 Apraxia at 4 - ADD???)
Anyway he just was very distracted because he was in his classroom in the evening which she was videorecording him ( and he could do what he wanted with all the toys which I suppose are only given out one at a time when his school teacher and the other students are there )
All things considered if the general Hanen style attitude comes into the school( its a great school just very behaviorally oriented ) it will be a great thing

Tuesday, February 24, 2009

Taurine - 2 year anniversary

Just wanted to mention that we started Taurine on friday ( feb 19 i think )
He seems a little more tired in the evenings and wants to go to bed earlier
I read that this supplement has a calming effect
Otherise I have noticed no other change
His ABA sessions do note more talking it seems but again I am not sure if its the Taurine
Also its been 2 years now since we found out that R was autistic

Thursday, February 19, 2009

Lovely evening

Had a simply lovely evening
Lots of giggling tickling and rolling around on the floor with R
Simply divine
R's even at 4 has such enchanting babylike ways.All the little things that have leave a permanent foolish doting smile on my face
He watched my tweeze my eyebrows while he was in the bath and while I was toweling him dry stroked my eyebrows and kissed them several times. I suppose it must have looked painful

The Boy who loved Windows and other things I believe about Autism

I am reading this simply amazing inspiring book right now. Walker is a child who has severe Sensory Integration Disorder.

In Walker's case the world is so stimulating that he shuts it out. Since Stimulation is what the brain nourishes itself with he is basically shutting out his own growth.

In my opinion SID is at the heart of Autism – certainly the brand my child has . I am reading it voraciously because it is so interesting and jives so well with what I believe about Autism

  • Autistic individuals have the capacity for love and for loving. However for relationships to be formed sensory pathways need to be laid out. For example you cannot form a relationship with mommy if you never see her full face – all you see if disjointed bits.
  • Autistic individuals may not like to be hugged ( r loves it thankfully though ). It may simply mean that their sensory system perceives physical overtures as overwhelming or painful
  • Same with smiles
  • The same thing with not looking you in the eye – if you are oversensitive the eye gaze can just over load you with information. Or if you are not able to see the entire eye with the face and the expression then you are not getting the messages that make looking into someone's eye meaningful
  • They may lose themselves in spinning wheels or rocking not because they are fundamentally different from us but because the world is too much for them and they need to zone it out ( example Walker's mom realizes that he zones in to the light pouring in from windows in order to blind himself )

So what is a mother to do when you have a child that you don't understand instinctively?( To many parent this is really at the heart of their pain in the first stages of motherhood – I don't recognize my child .. he is so different from me )

To help your autistic child ( and I know its very very hard ) you must not take any of this personally.

Use your child's behavior as a clue to what will work for them

Perhaps face to face is too much – would your child process things better if you stood at the doorway.Would your child recognize you better if you wore the same kind of perfume every day. Does the child seek sensation or avoid sensation

In what situations is your child more "stimmy"
How can you go about systematically desensitizing them to stressors

The book is lovely . I am looking forward to gulping down the rest of it tonight

You can read it online here (http://books.google.com/books?id=1Dvix3Vp6IwC&dq=The+boy+who+loved+windows&printsec=frontcover&source=bn&hl=en&ei=xpudScr7CqGjtgfTxfzkAQ&sa=X&oi=book_result&resnum=4&ct=result#PPA297,M1)



 

Tuesday, February 17, 2009

25 things, Autism Style

  1. WHERE DO YOU CURRENTLY LIVE?
    In Tennessee

    2. WHAT IS YOUR CHILD'S NAME, AGE AND DX?
    R, 4 yrs 3 months , Autism

    3. WAS YOUR CHILD PROPERLY DIAGNOSED?
    Yes ! I spend a lot of time in denial though R just did not fit the impression I had from the media of unattached, in his own world child. My parenting style is attachment parenting and R is SUPER affectionate . My MIL who was visiting at that time was really really worried though as she thought he ran around like a cousin of hers who had severe problems. When the psychologist heard us describe him he told us that he did not sound ASD at all. And he felt that today ASD was over diagnosed. It took him one hour of observing R to tell us that he was very clearly ASD. It was Friday Feb 26-2007



4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?

I was devastated .The diagnose was a butthead who was practically pushing out of the door so he could start his weekend . I am yet to met a more insensitive man . In fact his main worry was that R was touching his stupid blinds. He gave us a really stupid book full of outdated statistics like 75 of kids with Autism have MR etc etc. This book "the world of the autistic child" by Bryna Seigal is one of the most depressing and annoying books I have read

5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD?
Apraxia

6. WHAT IS THE BEST THING?
R's unique and intelligent mind. How much it has changed my life. How singlemindedly and fiercely he loves me and his dad.

7. HAVE YOU TRIED THE DIET AND DID IT WORK?

Yes. I really don't see positive effects but blood tests show that he has gluten intolerance
8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?
R has very high levels of mercury which made us look for a good DAN doctor . We were just doing the Porphyrin test to rule things out and then suddenly found a VERY high level of mercury. We are doing some of the more gentler things – MB12 shots . Vitamins, Enzymes and Probiotics

9. WHAT METHOD OF ABA/Behaviour Therapy DO YOU LIKE BEST?
I like Floortime, I do Like VB. We have a great speech therapist who is using PROMPT. We are even open to HANEN ( to me exactly the same as Floortime except it only focuses on communication ). His school program is talking about offering it as a training

10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?
Love your child unconditionally and work from their strengths. Help them have a strong sense of selfworth.

11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?
Its high
12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?
One adolescent
13. HAVE YOU EVER MET A RECOVERED CHILD?
No. but I do know one in online life. Her mom used intensive ABA


14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?
Per week

VB, Speech, Special school and Floortime Style Parenting



15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?
Minimal. Some speech. No OT

16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?
I don't know. My DH and I are just as close though

17. DO YOU HAVE A GOOD POOP STORY?


18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR KID?
That he would want him to come to a casino with him ( R would make him win like Rainman did )

19. WHAT DO YOU SAY WHEN SOMEONE ASKS "WHAT IS AUTISM?"
I ramble on and on
20. WHO IS YOUR "AUTISM COMMUNITY HERO"?
Caroline Hill, His teacher. Over all its Dr Greenspan.

It's unbelievable how much he has empowered parents. Given out so much stuff for free. You can pretty much parent in a Floortime way by borrowing "Engaging Autism" from the library and listening to his Podcasts ( free on Itunes ) I love Dr Weider too. I am a full time working mother who also travels for work. One of the primary ways I learned to Floortime was by burning his podcasts on CD's and listening to them on my commute.

I saw them at the ICDL conference recently and if there are angels on earth , Greenspan is one

21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?
Greenspan

22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?
Yes.Will continue ,Mercury free and slower schedule

23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?
Yes they have accepted Autism but I think his grandma expects some kind of genius.

24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?

Still learning .The biggest so far is to celebrate what is and not mourn what isnot.

To seek less and to do more

To believe that I know my child better than anyone else

25. IF YOU COULD GO BACK IN TIME, WOULD YOU CHOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?
No. He is a really lovely child and I am VERY grateful for him.But I would choose for him to have perfect speech with no apraxia . And not to have sensory challenges.

Monday, February 9, 2009

Sickies are here

Well R and I both have the sore throat and the sniffles

Work is a constant underlying stress right now . I am traveling this week on work( I and my sore throat are sitting in a hotel room right now)

DH and R will join me for the latter part of the week . We had a weekend that was full of drudgery .So I was busy getting all of R's food done for the week ad frozen so DH can just bring it with himself . Apart from the drudgery of all the chores R and I had a really cosy lovey dovey time with loads of snuggles, cooing reading books and hugs and compliments

I also was feeling too sick on Sunday afternoon to accomplish anything worthwhile so I read a book by Jeanne Dams (http://www.fantasticfiction.co.uk/d/jeanne-m-dams/malice-in-miniature.htm) and really enjoyed it

Gluten Free is no joke as there are very few things that we can eat outside . (We do cheat a little as he will occasionally have Mc nuggets ) but for the most partwe try to eat GF

Actually food is a major stressor right now as I am trying to eat healthy and lose weight and my willpower is undermined with all the food that surrounds us with eating all meals in a restaurant and says Eat me . Before I conceived R I used to be 20 pounds lighter than this

Thursday, February 5, 2009

Sloth

Today I was just so stressed at work ( I have been having a little insomania lately because of the stress too
Anyway I did little of worth after home
Except make Pizza from scratch( yes base and all - kind of a necessity now because of his Gluten allergy ) - R was so excited to eat Pizza instead of his usual veggie meat rice .. he kept coming too the kitchen and saying cheeeee s and peeesa ( pizza )

How precious these hard earned words wrested from beastly Apraxia are

Wednesday, February 4, 2009

New places

New places still casue stress to R .. today I met DH and R for lunch at Mc Donalds.
School closed once again due to snow ( its a sunny day and NOT snowing except for a few sowflakes here and there )
He was sooo stimmy there and at the library - also busy stimming on the Nursery rhymes written on the wall
He was so very intentional though and really trying to talk,
Like he me to Seeeit- doooown ( sit down )
Apraxia/Dyspraxia - the horrible version that R has is a truly terrible thing. I hate it with a passion
OUr rug game usually goes like this
He will sign More and lie down on the rug ( a bed spread ) and give us enticing looks and make scute sounds till DH and I hold each end of the rug and swing him
We swing him for the duration of the song
He tries so hard to get us to sing "Wheels on the bus "( long song ) by signing for it
Yesterday he was desperately trying to remember songs so I would quietly make the hand gensture for him on the side - like "Twinkle Twinkle" and he would quickly pick up on it and immediately demand we swing and sing
Toooo cute

Tuesday, February 3, 2009

one step back two step forwards :-)

R has slowly been coming out of his stimmy within himself phase and started looking more "with it"
There is this theory that I have heard from too many parents
This theory goes like this
After a period of regression there is this big developmental leap
I dont know if its becasue of this, or because of the snow days but I just had a magical evening with R
I did start by joing in a computer game where I was quite surprised to see that R can play "Patience"( that is what is called in India ) basically cards are kept upside down and you have to keep matching cards. ( basically you have to remember which card was where )
Lots of Sensory motor play - roughhousing, tickling cuddling, rug swinging , rolling on exercise balls
To tell you the truth these are the cheap tricks of Floortime
But at the same time they give R the important message that people can be fun too
He also used the potty by himself without being asked to
How cool is that!
Anyway I am not knocking my advertising "mommy is fun" too as its January has been such a rough month. Following the lead and playful obstruction are just not cutting it. Hopefully school will not be closed tomorrow and I can start to test out the theory of whether school is casuing the stress or is it just that his neurons need to hibernate before bursting forth at a new level

More is not always good

Well we have had a lot of therapist cancellation due to snow ( believe it or not it sometimes snows here in TN )

When it snows the whole city just screeches to a halt.

Well R had no school and just one hour of therapy yesterday and he just seemed so much more with it. He sought me out a lot ( the whole past month it seems like he only seeks me out for love fests and not for any other play-type interaction )

He dragged me out in our snowy backyard to play in the swing and then dragged me to Lucy's house.

A little bit about Lucy and Eli. They are the wonderful couple in their 60's that live 2 doors down and are just so amazingly good to us . Actually they are just good. She is an artist , he is a psychologist. They still seem so in love. One of the FIRST couples I have seen who does not put the other person down ever. I and DH try ( but don't always succeed). Anyway for some reason R ALWAYS wants to go to her house. ( He really has such a great radar for good people) . We went to her house and she is very good to him and lets him explore all over the house. Sought her out for a few hugs and demanded a candy cane( as in he started looking around for it in her living room and she immediately got them out for her

Anyway even after coming back he played with me in the IKEA swing and then in the bath made lots of words ( of course trying to keep making the words fast so I could not participate LOL – TOYS BOYS RUN WALK and strangely WATRE - for some reason as soon as I saw it – it felt like that SHOULD be the spelling )

He does not play because he does not know how to

Who says you need a psychology degree to diagnose Autism.

This sentence which pretty much sums up the Autism diagnosis. was said by an very astute 3 year old daughter of a friend.

Really we need to setup play dates

According to Greenspan's podcasts the ideal curriculum of an ASD preschooler is a combo of

  • 6-8 Floortime sessions a day with Parent
  • OT
  • ST
  • Maybe 2-3 hours of Preschool ( MAX but not at the cost of one on one interaction with parent)
  • 2 – 3 PLAY DATES a week ( R probably has that many is 6 motnhs and even in those he prefers to play by himself )

Sunday, February 1, 2009

new look for the blog

This is fun!
I love how easy it is to write a blog and to make it look pretty
Today was quite the abysmal day for Floortime as R was not interested. He did well in ABA though and was cruising the Internet on Playhouse Disney - downloading sketches etc like a champ .Its so funny to watch!
I have a stressful work week coming up and today was spend in feeling horribly tired becasue we Washed and changed all sheets - towels
Atul went grocery shopping while I and R did Floortime ( I should say .. I tried and R was really not into it .. we rwere outside - it was a cold but sunny day .. but R spend most of his time flitting from activity to activity without paying any attention to me -
Sandbox to pail and shovel to the Blues Clues Puppet
I took him in the stroller for a walk
Then came back and while Atul chopped all the grocery I made
1. Chicken Biryaani
2.Cauliflower with Cilantro
3. Fried Potatoes
4.Minestrone Soup
5. R's meat and veggies for the week ( he eats pureed food for dinner everyday as he has major issues with texture and this is the way to make sure he gets balanced food and also enough of it )
I do already have some meals in the freezer which I will pull out for the later part of the week
He had a good session with his evening therapist as well and he is looking so sweet while he is sleeping
Atul went to bed and I am supposed to be finishing my work but instead I am here LOL

Floortime Lite Mama

On my life as the mother of an adorable 5 year old with Autism and Apraxia