Friday, August 29, 2008

Too much work

I am sick of all the work in my life right now
It feels relentless
Taking care of home and R
Endless feeding and cleaning
Everything getting dirty again in record time
The never ending remodel
I just want to cry

Pureheart! Braveheart!

Today I had to make a business presentation.
I was struck with such a case of stagefright. So paralyzed.

I felt like I would forget all the things that I knew so well.
So afraid that I would disappoint.That people would look down on me and figure out how stupid I really was.

Autism is like an extreme case of stage fright. Faced with a world that can seem so confusing and demanding, a child with autism can retreat within themselves!

Imagine trying to make sense of the spoken word that feels like a foreign language that you are barely comfortable with .Imagine all sensations so overwhelming that you sometimes just have to indulge in repetitive activities and get inside yourself. Food textures that make you gag… smells too strong ….not knowing where your body is at all time in space.

The thought that my little boy deals with that everyday moves me to tears




Tuesday, August 26, 2008

2nd appointment

Today we went for our second trip to the DAN doctor
Drove down and back in one day - Tiring but not really that tiring and R even did his evening therapy session and in fact did it well and seemed more regulated afterwards
Overall we updated to the doc on progress on the last 3.5 months
1. More aware of surroundings - like now he realizes when the therapists drive up in their car and the bell rings - its means play time is over
2. Hyperlexia is blossoming
3. Little bit more rigidity
4. And most importantly - he has finally started consistently trying to label words lie Buh - for bird
Boo for Book , Ha for hi , all the first soundsof numbers and letters ( except the tough ones like K and G )

The doc was very happy at the progress - he really seems like such a sweetie
Overall these are our next steps
Again need to get on with the Gut Healing process -
the lab tests show evidence of Yeast overgrowth and also of a strong Gluten/Wheat intolerance

Get on a GF diet - C should be reduces too but not dramatically !!!( 4 day rotation - yikes he has pizza about 3-4 times a week )
Start with Probiotics 1/2 each morning with minimum food
If all goes well in 2 weeks
Start with enzymes ( start with once a day and then go three times a day each time with meals 1/2 capsule each time )Enzymes and Probiotics should never give together as they will digest each other
After about 5 - 6 weeks
we should get a prescription for Diflucan - for 2 weeks followed by 3-4 weeks of Nystatin
I also asked him about any natural or gentle chelators
all this while the mercury is in the system and it cannot begood for him
He talked about Chelorex or Zeolite

Friday, August 22, 2008

We are more alike than different

Home remodeling going on and I physically feel drained all the time!
I am not even doing much work on it- DH is pretty much doing it
And I still feel tired and drained from it
DH said yesterday - and he is right - that I feel unsettled because of all the change.
We got to discussing that Neurotypical humans have so many Autistic traits!
I have felt this about people from different cultures - all humans have the same emotions - the difference is in how much of the trait we have or how much of it we express
I think the same may be true of Autistic people
Change is stressful for all
But is debilitatingly stressful for Auties
Sameness is attractive
Not in itself
But as its one less thing to cope with!
Which is probably one of the reasons why numbers and letters are such big hits with so many auties - they stay the same in a bewilderingly changing world !
The DS society's slogan is so true for Auties
We are more alike than different

Monday, August 18, 2008

Looking more and more different ... and that is okay

Yesterday we were at a friends cookout and really had a good time 3 other couple were there with a total of 3 amazing Neurotypical kids
Everybody was extremely nice and went out of there way to make R feel comfortable and included
SO many of our friends and their freinds are such nice people
Well R looked soooo different from the other kids - As it was a new situation he was so stimmy - he would flap his arms at the swing and just make all these odd grimaces
He always does this when he is stressed
But he was totally well mannered did not bother anybody and after a while I took him to their playroom where he got totally relaxed after playing in a LARGE room with just me and a lot of books about numbers
And then by the time it was time to leave - R did not want to go home at all
Anyway there were a few things that I learned
New places stress R out but that is Just all the more reason to go to new places
1. A little time away from the group in a group helps R deal better with the group
2. Maybe I should have prepared him a little ( picture schedule ?)
3. I am so proud of myself for not getting too antsy about how odd we looked
4.DH rocks - he is just so relaxed - when we came back I asked him if he felt awkward about the stimminess - he replied "It was their little girl right"
He ACTUALLY DID NOT EVEN NOTICE R stimming and in fact noticed that one of the other kids was going cheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeese cheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeese on the swings. DH's general attitude in life is "I'm Okay " and I just soooo love it
5. Another reason my DH rocks is that he will probably keep dropping R to school on most days - so that R does not spend 75 minutes on the bus each morning

Wednesday, August 13, 2008

A few of R's Favorite things

Here are some more of R's favorite things
Have I mentioned he loves letters and numbers
Letters and words he is kind of bored with now you will see a couple of letters from the second line haave been taken to make the first word - his name
- numbers are the current passion
Here is what he wrote on his board a couple of weeks ago

His other favorite things right now are
The measuring tape ( numbers on both sides )

The calender ( NUmbers AND days of the week - made dear to him by the "TMBG" song - on Monday I'm never gonna work ) - here is R reading the claender just like DH reads the newspaper sometimes in hotels at breakfasts

More number madness
One totally different things is flowers and fruits - he adores the tomatoes that DH is growing - if I pluck one he wants me to put it back ( on his feet you will see the measuring tape as it muyst go everywhere with him now )

Tuesday, August 12, 2008

A few of R's favorite things

One of the nicest things about using your child's interesting is you really understand what he loves and why
Here is R running with a broken plastic Margarita glass - he loves to look at things through this glass

Go to sleep please

OMG - R's sleeping really sucks these days He went to sleep at 11 and is up at 5 am
He has 2 hours of ABA and school today ( first day of school in fact )
As we cosleep this is putting everybody in a VERY bad mood - for both DH and me - the sleep and eating pickiness - bother us the hardest
I think I am going to buckle down and get some Melatonin

Monday, August 11, 2008

School Bus Woes

Yesterday the school bus lady acalled to say that she will be here 1 hour and 15 minutes before start of school
it is RIDICULOUS - a 3 year old basically having to spend 2.5 hours in the bus every day !!!
She was actually even quite "put upon"when I hinted- okay said - that 1 hour 15 minutes was too much
Luckily DH is dropping him the first week by which time I hope they will have figured out their schedule or something
I am spitting mad
One funny thing - I called her 10 minutes later to tell her DH will be dropping R the first week And she acted like she had never spoken to me before

Friday, August 8, 2008

Can I just say I love his school - I wish they would have it year and week around and they had the school extending school all the way to
HIs teacher and TA were here - they are so nice and sweet and supportive
I need to note the regression for ESY next year
He basically regressed during the summer for eating and also increased sensory issues - lots more stimming
Over the summer ( we started the DAN stuff in May )
he started vocalizing and pointing - he points all day - when he watvhes a DVD he wants to go to a Pick a Song option so he can choose EXACTLY the song he wants - I really thing this is his way of exercising control - I like it as well as we are opening and closing circles of communication while doing something he LOVES
But became MORE picky with food and slightly more rigid as well and more difficult to transition
I truly do NOT Think that this last thing is a bad thing ( increase in awareness, knowledge that he has some control , testing limits - all these are really good and healthy things in my opinion )


Nada but fun

I did no work with R yesterday - just housework , ironed a basket of clothes , made dinner - did my fly lady routine -
When I go to bed - the house looks sooo picked up now guys -( until R drops flashcards and thing with numbers written over them all over the house - this his thing - he loves all these educational toys - while I long for him to play with a doll )
However - I think I still spend a LOT of time doing housework - nothing like the 3 hours per week the Flylady promises - I would say 1 hours every day
We saw a horrible movie completing our series of watching movies that are horribly depressing or bad
10,000 BC ( VERY bad )
The Myth ( VERY bad apart from a glue fight that was the classic funny Jackie Chan, the rest of it was all very very bad , levitating people ,tombraiders and nonsence )
Atonement ( good but kind of tlike the English Patient - very depressing )
I am Legend )( nice but depressing )
Jaane tu ya jaane na ( boring )
Juno and Casino Royale are the only decent movies we have watched in the past few month
Please dont despise me for Casino Royale - I love James Bond - yes even when does crazy things like reviivng his dead heart himself :-) with just a little help - I miss Pierce Brosnan though
If you are wondering why were are watchng so many movies its becasue our rewards programs reward us with Blockbuster coupons so I can waste what little free time I have watching crap

Wednesday, August 6, 2008

We are the way we drive

It occured to me on my way to work this week that DH and I think about Autism treatments in the same way we drive
Me anxious that I will miss an exit that I need to take
DH driving along effortlessly - sure he will get there eventually

Tuesday, August 5, 2008


Hmmm _ I am wary but interested oin recovery stories -
just makes me wonder if its the really milder kids diagnosed with ASD after the expansion of criteria who recover
The speaker was Deborah Fein - very knowledgable and engaging
Anyway the recovered kids certainly did not sound like R
Rapid rate of progress between age of 2 and 4 was one of the man characteristics of these recovered kids
While R is making progress- for which I am very very grateful - I certainly would not call it rapid/accelereated or any of those terms
DH claims that if only R had language his issues would be minimal
I see the Sensory issues- his need for stimming as just as huge a barrier as language is
His relatability is coming along well - with all but his peers
Though I do think one should teach that part last
Something worse than watch your child be a loner would be
To know that your child desperately wanted friends but that they did not want him

Monday, August 4, 2008

If I m ay say so myself

Pretty excellent parent therapy evening ( if I may say so myself )
Just lots of games of tickle and chase - swinging in the hammock
Lunch at Apple bees was such a disaster today with R just being so stimmy( stemmy I should say - that is the way his therapists spell it and it always makes me feel ike he is sprouting branches or something) and not wanting to eat and the evening was so brilliant
Its amazing how in the same day he can have such a diffent level of with-it-ness
While its close to midnight I am particularly feeling like a grand success as I waited till he fell asleep and then cut his nails - I had to wait till 11.30 to do that
( This is less an act of great maternal care ... more like self defence - r loves to give me ticght hugs and squeeze my cheeks in joy which can really hurt )

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