Thursday, December 23, 2010

The second week of December

POST FROM before my vacation started. Found it in my drafts

Friday

I return from my out of town trip.

R is always cool and distant when I return  for he is a child of much self respect.

We drive to the cabin

After much groveling and wheedling on my part,  he is mollified

I have a surprise for him 

The Mozart Brahms  CD  which was our bedtime music  has become completely scratched owing to R's penchant for carrying it around .

The old CD now skips and drags and causes R to weep piteously

But unbeknownst to him I have ordered a new one ( for the princely sum of 2.95 from the ubiquitous Amazon )

And he is delighted when the dulcet sounds of Mozart fill the room with no interruptions

Saturday and Sunday

Apart from taking a walk I accomplish nothing too - its just sooo relaxing

We loll in front of the fireplace - R plays with his numbers .

 He is learning to say them in Spanish though I know no Spanish  - Nada

 R holds up numbers like "101"- he scans my face eagerly for me to say the numbers in Spanish but  I am nonplussed

"Cero" he hints

I am useless  and he looks away in disgust

We go to Wal-mart

R surprises us with his great eagerness  to go - but we realize that its because he is on a mission to collect the candles in the shape of numbers

In front of the candle display he is transfixed however and cannot make up his mind

We tell him he needs to pick up only one

But he cannot choose and starts to wail -

As our policy is to not tolerate bad manners - we cannot give in and we tell him no candles and leave the store  -

R dances like an angry dervish and everyone stares at us ( no doubt thinking "useless parents") but somehow we really dont care

Boundary setting is soooo important 

On my trip I had a Salad from the California Pizza Kitchen that had Jicama in it and I am mad for this new ingredient and we hunt for it in two stores and I make a salad full of ingredients that contradict but somehow is delicious

Sunday and Monday

Are days of stress, evenings of ceaseless toil and nights of insomania

Tuesday

LOOOOOOONG day at work

I am very worried about what we will feed R in the cruise as he eats 4 things and I know that without these he will starve !!!

But otherwise I am looking forward to not coming to work with an eagerness that is painful

Not only is the office horribly busy for me  - home is terribly busy  as we  have to get Christmas cards send out, gift cards done.

Luckily DH takes on the large part of this and I simply make lists and hand them over to him. Really I dont know how couples where both work outside the home - get it all done

I rush home in the afternoon as DH and I are playing tag team with me handing things off and him picking things off.

Plus all must be timed perfectly as R is home from school ( snow day ).  This means I must go home when he and DH are out.
 ( Otherwise there will be MAJOR drama - like you would not beleive- when I have to leave for office. He can easily behave like a 2 year old with separation anxiety. Not too surprising really . DH and I speculate that 2 is really his emotional age  )

When I go home - our cleaning lady is there and I dawdle gossiping with her. She describes her current conundrum. One of the people she cleans house for has asked her out to dinner. We discuss the pros and cons and consequences  ( pros= nice,clean, makes jokes;  cons- no spark)
Its very nice to gossip and I waste a lot of time ( which I dont have ) and then its back to hurry and worry
Finally the long day is over.

 As I leave the office and say a triumphant goodbye to my friends says grimly

" I heard all the flights are delayed out of the airport"

Another friend adds

"Its the worst time of the year to go to Disney.. the crowds will be insane"

I reply  gleefully

" But it will be sunny  everyday and I wont be working"

And I cannot think of a bettter exit line

Wednesday, December 22, 2010

The Disney Winter Vaction : The Disney Wonder Cruise


I am typing this post on aboard the Disney wonder waching the Bahamas retreat into the distance
( well if that does not sound like the beginning of a story book I don’t know what does )

Here is a little of summary of what we did

Thursday
We set sail from Cape Canaveral .
We have had to stay for a night at the Residence Inn – a hotel that R really likes as they have good internet service – plus ample space
Also we are able to cater to his very specific taste profile ( by bringing food from home ) as they have a kitchen

We go the ship-

Ours is called the Disney Wonder - and a wonder it is

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The ships are HUGE - here are DH and R on the 10th floor  ( which even has two basketball courts )

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Our room is quite adorable and has a nice double bathroom and a private balcony

This little balcony that looks out into the ocean may be my favorite part of the ship

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All three of us spend time on the balcony - R spends a lot of time standing at the edge and looking down ( while we keep an eagle eye on him - afraid that he will fall down )

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There is a party on the deck as a send off to Bahamas and all the characters come and do a lovely dance

R sits atop DH's shoulders and has a good time

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R dances too

But he is quite alarmed when we pull way  and keeps asking for the hotel ( Residence Inn ) .
“All done Ship hotel “ he mewls

We go and watch a show and I think of how much I love Disney when I see that they actually have sign lanuage on the side ( see in the picture and they do a FANTASTIC job ) for the hearing impaired and all their public TV's have the captioning on

This is a main reason why we spend so many dollars on Disney - becasue they go out of the way to welcome people of all kinds- especially people with disabilities

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When we return to our room we find the room has had a lovely turn down service and the host has actually shaped a towel in the shape of an animal

Can you see the monkey hanging from the side ?

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Friday
R has slept very poorly last night and so have we

DH is a doll and brings me break fast in bed

His kindness and the stunning vision that is outside our balcony removes my fatigue

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I am very excited this morning as we are going to be playing with Dolphins on the Blue Lagoon Island of Nassau 

I simply ADORE dolphins
Was there a lovelier creature ?

We stand in line waiting for this great adventure - But R is sooooo reluctant to go and keeps whining that he is done with the ship .

My heart sinks as we have spend all this money and time for a vacation that he will enjoy and it suddenly seems like a waste .

( AND we have 10 more days to go – suddenly I think of how much easier it would have been to just spend some days at the cabin ).

I can feel my heart in my feet

And then  I remind myself of how important it is to widen his experiences ( for this is one of the major factors that compounds autism as a disability – parents of auties get discouraged when their children don’t enjoy new experiences . And  this is compounding problem as their children’s worlds shrink smaller and smaller as they try fewer and fewer new things.
While if they had persisted in trying – they would be so much better off in the future. For the children were not objecting to the activities but just to the newness  )
Still this must be the one thing that I miss about the NT experience – the desire to explore- while R needs to be forced to explore  and my eyes fill with tears
Just as a signal from above – two loud and whiny ( and NT ) kids throw a huge tantrum  – their mother and their father look around embaressed . But I smile at them gratefully for they have reminded me that I am getting into the familiar autie mum trap of imagining that all is perfect in the NT world

Then another sign!

Two parents walk in with a severely disabled child in a wheel chair. The little girls eyes are closed and her hands are folded across her chest

I look at the mother gratefully - for her courage has inspired me.

If she can take a child whose eyes are closed to look at dolphins  - surely I can take a child who merely wants to shut his eyes to this new expereince

We make our way in the boat

How can I describe the beauty of the ocean ?

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The stunning shades of blue and green . Truly the greatest artist is the one above

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Once we reach the island and get to the alcove to play with the dolphins – R is PETRIFIED .

As I can clearly see that he is not enjoying himself – I tell him to go with DH ( that was a well spent 120 dollars for his ticket to play with dolphins)

R thinks that I am in mortal danger

From his perspective the dolphin is making squealing sounds and cavorting in the water

This is the dolphin “singing and dancing”
Yet to R – it appears that the dolphin is making a battle cry prior to eating  me his mother

I get loads of dolphin hugs and kisses .

As R sees the hugs, he suddenly realises that the dolphin is being good to me.

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The dolphin hugs like R – putting all his weight on me
He kisses like R too – just putting his mouth on mine but not puckering

Gosh how I enjoy this

When DH asks me if the encouter was worth it – I tease that Sean’s kisses are the best kisses ever

DH teases R  that his mother now loves Sean because he is so nice and fun and now  I will be with Sean

R looks away unhappily

But I find later that he takes his own preventative measures by throwing my bathing suit from our balcony into the ocean

DH speculates that he  probably did this in as an  act of jealousy

If I cannot wear a bathing suit - I  will no longer be able to be in the ocean and spend time with Sean the dolphin

While I am really sad about the loss of the bathing suit – I am also very proud of R as this is planning at its finest

He is a very posessive child and the next day when two girls ask me to look at a castle they have made and I coo over the castle obligingly - I find that later after we all have moved away - he has kicked the castle down

If he was NT,  I probably would be angry - but as I am an autie mom - I am very proud of his excellent problem solving

Saturday

We reach Castaway Cay – the other Bahamas island on this cruise

This island is owned by Disney and its really beautiful

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R is crazy for the ocean and gets into the water even though the water is FREEZING


DH has a nice barbecue in the ocean - though a gale starts

There are so many fish in this ocean


We have a simply lovely time in Castaway Cay

R loves going out the dinner and the fuss the dining crew make over him - cutting his pizza - filling his sprite glass.
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He loves how a water glass has his name on it ( Disney service is better than anything I have seen )

DH has brought a bottle of champagne as I have said that drinking wine on our own balcony is one of my "iconic moments"

We drink Champagne and watch the ship glide over the gorgeous ocean

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Sometimes we toast the fun we have had and how happy we are

And some other times,  like today - we celebrate our courage in trying out new things - even when things don't turn out perfectly

There are people who think of life as an adventure to be explored and there are people who think the world is a place to protect yourself from

And I know what we would rather be

Thursday, December 9, 2010

The first week of December

Friday

Our alarm clock goes off at 6 - DH usually wakes up first and then he tries to rouse me and R ( who has jumped into our bed sometime in the night)

We wake up grumbling  - R & I - we are NOT morning people( DH is sunny and cheerful though )

DH hugs R ( too tighly ) who rolls over and puts his arms around me, whining reflectively

"Mama hug, Papa Hurt"

Oh how I love declarative language !

Saturday

This is on strange weekend as we do not go to the cabin owing to a hectic social weekend in the city
2 parties !!!

In the afternoon there is the ASA party

R is currently being taught piano by a lovely lady who has Autism herself and she has set up a talent show in which she insists R takes part

The Auties put up a great show !!

R and she play Christmas music ( she is practically guiding his fingers as he is very blase about being on stage and just wants to go home- but he does look adorable )

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She has asked us to come 2 hours early and the party is too long for R

Also, I think this year he is really getting the whole idea of Santa.

Mall Santa and the Santa at the ASA party are rather tame compared to the Santa Claus  we are reading about at home - with reindeer drawn sleighs that come from the sky and elves etc

Seeing Mall /Party Santa from his eyes -

 I totally see his point !

Though ASA party Santa does try his best and does a rather convincing Ho Ho Ho

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Are your kids disappointed by real life Santa - or do they consider him to be the real deal ?

In the evening, DH and I go for our Christmas party

As we want to take our Christmas card pictures as well  - we wear dazzling clothes

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R takes one look at me and squeals "Queen"

Was there ever a better compliment?

(Well actually there is - DH used to call me his "doe-eyed lovely".

This loses something in translation - the Hindi word -Mriganayani -is far more charming . The delight I got from that compliment has been somewhat tempered by DH's enthusiasm for Venision.!!!  )

R has an evening being babysat by his therapist and they go to Mcdonalds for dinner where he tells her when he goes to the bathroom " its too noisy in here " ( Did you notice? A full sentence !!!! )

He is petrified of the automatic flushes and the hand dryers )

When we return, he and S and snuggled up in bed watching Word World and its clear that he has not missed us at all

Sunday

My beloved friend L lives close by .

We met online and R and C go to the same class( what a coincidence !!)

We have a play date

Which like Autie play dates go-  comprises me and L chatting and eating lunch while the kids all do their own thing

We have a lovely lovely time chatting about all the things Autie mums chat about - therapies, money , schedules, progress .

And how we have the best kids in the world

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In the past couple of months , R has seemed worried about C lately.

 He often wakes up crying in the morning saying

"C is sad.. C is crying  "

As C has always looked perfectly happy to us - this has been a puzzle

But I have been trying to help him be okay with his sorrow by pretend playing with The Little people characters

I call the blond girl- C and the brown boy - R .

We then do a little play where  C says "I am sad' , R says "its okay " C says " I feel much better now "

This is a great comfort to R

Imagine my surprise, my friend tells me that C has actually not been feeling well for the past few months ( she is fine now ) and so she really had been feeling sad for a few months

So R's worry was not unfounded after all

Monday

It is bitterly cold .

Dh and I drink ginger tea and watch Law and Order , LA lazily ( not bad , but not a patch on the original )

R jumps right in front of DH

When DH tells him to move and not dance, R does the FUNNIEST thing

He does a full out jig chanting "Am I dancing?" Are you dancing?"

DH and I are in splits

Somedays, the live entertainment in our house is better than what's on TV

In order to not spend the entire evening like slugs - we go to the Mall( our mall is just 5 minutes away )  and ride the train

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And play in the little play area

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Its interesting to see how much R coexists peacefully with neurotypical kids without showing any desire to interact


Tuesday

While DH has taken R to OT , I quickly get some exercise

DH and I have a tea ritual every evening 

Nowadays I am noticing that R tries to participate in the ritual too by bringing his own DVD or book and drink and asking for a cookie

So today I surprise him by arranging his snack and drink on the tray right along with ours

Oh how satisfied and smug he looks when he sees the tray  on returning!

He is now a bonafide member of the tea ritual

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Wednesday

I am very sad in the evening as I have to leave for a work trip tomorrow

Its only two days though

R always senses when I leave and is anxious and teary

So now - I write down a full schedule - exactly when I will leave and when I will come back .

And this really helps him ( though he wakes up at 1 and will not go back to sleep and so neither do I which especially is awful as I have a 15 hour work day ahead of me )

I put some flowers in my cofffee mug to cheer myself up - so I have something lovely to look at when I wake up in the morning and make my tea

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I read his book and put him to bed thinking of the day I will miss with my two special people

He drifts to sleep with his sooooo long eyelashes sitting on those round cheeks

"Do you know how happy I am to be your mother ?" I ask

"Yes"  says R

Monday, December 6, 2010

Blog Gems: Air your archives

Jen at King and Eye has this fabulous idea

She calls it Blog Gems


Here is the description of blog gems from her post -

what is so fun about this is that I am getting to read some old posts from my favorite bloggers that I had never seen before

Blog Gems - Air Your Archives is a forthnighly linky list where I will give a prompt and you select a post from your archives that fits the prompt. You do not have to create content for the prompt, unless you want to. All you have to do is copy and paste the url of the post into the linky list. Voila, an old post gets a second shot!

Here is what I reposted - an old favorite of mine on the love we get from our kiddos with special needs who it seems sometime have been born with an extra capacity for love

Being Loved


We are continuing with our battles over screen time.

Last night R is throwing a weepy tantrum at not getting the remote.

I lose my temper and tell him in a loud voice that I am disappointed with him

I sensibly know that I am at the limit of my patience and go off to finish the movie "Secret Life of bees" with DH.

The movie is all about a young girls desperate desire to connect with her dead mother and feel loved.

"There is a big hole in my heart where my mother's love should have been " the protagonist says

It occurs to me that a large part of the literature is devoted to the mother's love.

Never to what the child gives to the parent

Perhaps its because the books are written by the adults

In this story, ironically, its the love hungry child that seems full of love.

Last year when I was looking for an Autism sticker, I found there is such a huge preponderance of stickers that say simply "Autism awareness" and many that say " I love someone with Autism".

It seems especially the literature of Autism is focussed on the mother's great devotion and love.

Always from the mother's side it seems that there is the love, the devotion, the desperate search for help for her child.

And from the child's side, there are merely the special neeeds

The autistic child's role only to receive , never to give

Surely a mother's love is a wondrous thing

But what about the child's love?

Last evening after our tantrum, R plays by himself for a while.

When I go back upstairs up and apologise for yelling, R holds my face in his hands kisses me and says simply "Shee Ma " ( sleep with Mama)

Here is all he wants from his bad tempered mother:

That I should be the one to put him to bed

I have never been loved quite this deeply and unconditionally before.

Been the center of someone's world quite like this.

Pure love with no grudges ever.

Here are R and me 6 years ago before I knew of all the things that would happen to us


I wish I could tell the younger K

Its not going to be what you think

It will be hard

But it will also be gorgeous.

While it is true; I do  love someone with Autism

The charming corollary that has blessed my life , is that

Someone with Autism loves me

Sunday, December 5, 2010

On Hopeful Parents : Talking about Splinter Skills

Last month on Hopeful Parents I had talked about how much I dislike the term “Splinter Skill”

Subsequently, a few of my good friends and I had a thoughtful discussion about the term

What If the “skill” was surrounded by problem?

Example, a child had musical ability – however his sensory system was so oversensitive that he is unable to play on demand

In cases such as this, would we still consider the term to be demeaning ?

Second, what if the skill was a useless one?

I see the points

But I disagreed

My objections are many and I talk about them on Hopeful parents here today if you  have a minute, do visit the website

If you dont here is why I don't use the term

First, we never use the term for anyone but children with special needs.

Only in Auties, do we calculate the net present value of a skill .

Never in typically developing children

Consider the ability to spell.

In the days of computers and spell checks – an unusual ability to spell can be seen as having limited value

No?

But we deify this ability.

An entire cloud of popular culture exists around the spelling bee.

It makes no sense that watching a child spell a word can actually be a spectator sport.

But it is and we do.

However when an autistic child has a special ability such as guessing the day of any date, a photographic memory etc – we shrug our shoulders and call it a useless “party trick” - a splinter skill

Consider sports.

Parents of neurotypical kids do not sigh and say “ she/he will probably have a desk job someday? Why bother?”

No!.

Instead, they call themselves soccer moms and dads. They complain about their busy schedules ( but you know they are actually feeling proud )

These parents see something instinctively, that eludes us parents of special needs kids.

They see that just the act of winning at something- anything , being in the limelight for even a little while , being praised and feeling competent.

These things are supremely nourishing

These act lead to a blossoming  of your child’s spirit .

Second – when we don’t allow auties to have this feeling of competence, we are depriving those children that need this nourishment most .

While all children need self esteem, kids with special needs have a much harder road in some ways and so need it most .

When our children face the obstacles that life brings then , when they see themselves through the eyes of others as weird, when the world seems cruel and uncaring – then the voice that comes from inside that tells them that they are good, competent, successful, smart and beautiful may be the only butress they have

The third reason I get on my soapbox about this term, is because it is part of the emotional  climate of raising kids of special needs.

Everything is seen in the light of deficiency, part of a syndrome.

Fourth, this attitude if is part of our parenting perspective, will inevitably compromise our joy .

For isn’t taking pride in your child, one of the primary rewards of child rearing

And so when DH and I notice that R is saying the numbers – backwards and in different foreign languages – we exchange glances of pride

( No we are not moving to these foreign countries and its certainly doubtful whether our ability to count in their language would prove to be of any use if we did go there !)

We beam with pleasure and sashay it as our status on Facebook.

We accept with alacrity all the lovely compliments that our good friends give us and think about the wonderful treasure we have

And we are a little more happier than we were a while ago

We cannot control much in our lives

But we can control the words we use and the way we see things

And so, this is why I will never use the word splinter skill

I will see it as a gift and I will be thankful for it

Thursday, December 2, 2010

The week of Thanksgiving

Thursday

We buy a big Christmas Tree at Walmart - its fake as can be with it but can I just say R is UNBELIEVABLY excited by it  and the wreath

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We go to the Christmas inn for lunch - but all they are serving is the Thanksgiving menu and the only things that R eats when we go out are chicken tenders and pizza - so we have to leave and eat at the ubiquitous McDonald's

R does not care as the Christmas Inn is decorated with all sorts of Christmas paraphernalia and this is enough for him to think of the visit as a Grand Success

In the Mc Donalds there are a bunch of very noisy attention seeking neurotypical kids and DH says that he does not think he could be a SAHD if R was neurotypical - but I argue back that NT or Autie - R would still be a lot like us - quiet, bookish, gentle( kind of like he is now - just talkative and unstimmy )

In fact when we ask him what he wants for Christmas -  turns out that all he wants is a Christmas tree
 ( its one of his most delightful aspects- this lack of coveting. I have learned from him to question why I want what I want instead of simply thinking about how I should get it )

We spend the evening decorating it with shiny ( gaudy ) ornaments and with jingle bells

This is to be the last warm day of the year and R and I make full use of it by lying in our hammock swing on the porch, exchange compliments and watch the stars come out



Friday

I have been very la di da about the Black Friday Sales - informing DH loftily that material things dont do it for me any more

But something happens to me in Coldwater Creek and I transform from this buddhist type person - into a person that coos over suede and rubs her cheek over chiffon

I acquire so many clothes that at one point I have to ask DH to carry my pile of  shame clothes as its too heavy for me

DH teases me tremendously while I do a fashion show back at the cabin

And I am forced to admit that I am not a seeker of materialistic things in general but specifically speaking clothes make me happy

Saturday

R who is always mad for the new cabin new house - surprises us by asking to go home!

As DH and I are all rested and are itching to do some work around the house- so we agree with alacrity  - ( I am perishing to sort recycling and clear up our back porch where an alarming large amount of recycling has collected  and DH with yardwork )

One of the best things about blogging for me is to look at what we were doing this time last year

Looking back at last year I noticed that we used to spend a lot more time outside

Sometime this year, that changed

And so my resolution is to get back to an active physical routine

R and I are both creatures of intertia  - ie we usually do what we usually do - but when we get into good routines this really works in our advantage

So while I have to force R to get to the trampoline to jump - he enjoys himself so much- playing with the leaves , creating leaf-rain and jumping - that I also have to force him to come back home

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We sing Ring Around the roses and fall down with great crashes

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Sunday

I cook all morning , we jump and play all afternoon and DH and I do a great pile of laundry in the evening


Monday
All his therapies are cancelled today and so we loll about in the evening.

DH and I watch Lie to me lazily

I had decided that I would take a walk - no matter what today and though its bleak and already dark at 6 - I go out .

I am so refreshed by the walk that I take R out for a jump on the trampoline.
We have a blast even though a soft rain has started to fall .
while I love good weather - I sometimes love it even more when the weather sucks and we stick our thumbs at it and have a great time anyway

R has been dragging a whole bunch of groceries ( plastic pretend groceries ) with his tiny shopping cart and we have a lot of fun with these

I pretend to Baby Tad and Potatohead Santa want to eat and R feeds them various things

Today he says something funny.

He had been holding it in for a while and after he goes to the bathroom he says " I feel much better now "

I think he picked up the line from one of his social stories but I am thrilled !

LOL
This is one blog post I must definitely erase before R gets to the age of reading this blog

Tuesday

We go to the dentist for the FIRST TIME EVER

I am HORRIBLY stressed about this

R hates all doctor visits and weeps in a piteous fashion. We comfort him in our own ways

Me through Distraction,  DH by teasing him about being a wimp and a cry baby and the dental assistant by giving him a balloon ( she is the most effective )
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I am scared he will have loads of cavities owing to all the Junior mints in his ABA and the Sprite that is regularly mixed with water for him

But he has only one .

The dentist says we could repair it or just wait for it to fall out by itself

I tell a surprised Dentist that I love him for ever and ever and we are on our way, much relieved

Wednesday

DH and I go for our date lunch in Apple Bees

I am feeling shockingly indulgent and we share their "Maple Butter Blondie "

DH keeps telling me that I am "eating nothing" and should "eat more"

But when I discover with a squeak of dismay that it has a 1000 calories in it - he tells me that in his estimation, I ate 4/5th of it ( i did not !!!)

Men!!!

I want to go for a walk in the evening and R discourages me and says I should jump with him in the trampoline

We jump and jump and jump for an hour  till we are sweating even though its freezing cold

Then we lie in the trampoline.

In the half light of the moon and the street lamps,   the trees have turned to silver

I and R gaze at the skies watching the stars come out

It looks like there are always Christmas lights in the sky

I say "starry night"

And he says " silent night .. holy night "

Floortime Lite Mama

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