What we did in May

I have missed writing here this month

I feel like a walking to do list

Too much work and too much travel

Press the Pause Button 

To keep from having life turn into a logistical operation I keep trying to press the pause button

Since its summer, and the days are so long , that  even when I come home late from work we are still able to find an hour to  have picnics in the backyard

and lying in the trampoline staring at the sky

And walking on logs in the river

And sliding and sliding

And playing with flowers

We have instituted a policy of Tuesday evening being just R and mommy time

This day he gets to decide whatever he wants to do and we go ahead and do it and do it just the two of us

Sometimes its the library

Sometimes its to go to the grocery story and ride the cart touching all the bags of chips

GI issues 

One of the worst things to happen this month is that R's stomach problems are back .  His ped is thinking that this is the residual worms that did not all clear up  - so he is back on medication for it

The medication has a side effect of nausea and low appetite and I feel I spend all day coaxing bits of food in him ( that he sometimes will throw up )

His appetite is at an all time low - and its a source of unbearable stress and misery

Still this too shall pass

And why dwell on this

Isnt joy mostly a matter of focusing on the joyful bits

R's gran and aunt are here and are spoiling him rotten - his gran is the best cook the other side of the atlantic ( DH is the best on this side ) - and she is cooking us meals that are sublime

We attended a wedding of R's beloved Miss Kristen - me in my usual elaborate finery

The ceremony is beautiful

And R is fascinated by the trumpet which the kindly player lets R touch to his heart's content at the end

But he is very disappointed that Miss K is not making a fuss of him ( as she is too busy getting married )

And cries inconsolably in the arms of Miss S( who fortunately is also attending the wedding and makes a fuss of him )

Fortunately things end on a better note as Miss K holds him close and loves on him

I was full of stress as I started to write this post  - as I am leaving on Monday once again for a week long trip - with all the guilt that accompanies

But, writing here is centering me as always

I need to connect with all of you as I feel I have lost touch with you guys in the hurry and worry of this month

Promise to come and visit your blogs soon

Goodnight

A Very Very Happy Mother's day

A very very happy mother's day to all mothers

To those whose kids will make cute little cards and presents for them

And especially, to those mothers whose children won't .

Some of you will have husbands that will get you flowers

But some of you will not even have husbands

For they left when things got hard

 And your marriage was not the way it used to be in too many ways to count

( And sometimes,  in the night, you go from the place of being angry with him. And  you find yourself  in a place where you blame yourself for his leaving, for you know you have changed.

But you dont know how to find your way back to the girl you used to be, with her lightness and her flirting and her non-blaming ways )

Some of you will have children who show their love in a million ways, if not through cards

But some of you will have children that cannot show their love

Today will be like any other day where you may change diapers of children who are long past the diapers of  the cute cartoon figures .

You will cook and clean like every other day

But today you will also hide from Facebook

And you will try not to go outside

 Or turn on your television

Because everything, will conspire to remind you of all those cute moments that you try so hard  not to want

Mother's day to some of us  is the Valentines day of the mate-less and the Christmas of the loveless.

Like,  as Dani said in the post I linked above, you  got a million post cards from Italy

To those mothers, I am sending you heartfelt hugs and wishes

Just because you did not get thanked in the Hallmark ways, does not mean that you are any less of an amazing mother

For to continue day after day like you do

You, with your endless love

And your IEP-praying, online-researching, therapy-planning, worrying-if-you-are-doing-enough ways

Makes you an amazing mother

So give yourself a present

Try this year to not constantly evaluate your own performance as a mother

Be a little kinder to yourself

If you are alone on this road

Or if you feel alone on this road

Be your own best friend

Happy happy mother's day to you

You are an amazing kind of mother

The very best kind of mother

Say to yourself

I heart me

The Beginning of Summer

Lovely lovely summer is here

Slacker mom 

I have been SUCH a slacker mom - work has been frightfully busy and I have done so little floortime

A lot of snuggling and relaxing and being a couch potato

Even though R's idea of relaxation is really all of us on the couch - he will often insist "watching TV "and he will also veg out with his computer

Honestly overall I feel a much greater satisfaction and happiness and connected-ness when I am more active with him

But someday I just don't get around to doing it

I get busy with springcleaning and with watching TV !!

Outside Time

But because the weather has been mostly good - we are having a simply lovely time being outside

Surely no one provides more sensory opportunities than Mother Nature

The Olfactory

One  thing we have often noticed about R, is his great ability with smell and more importantly the pleasure he gets from it

DH and I are trying to discourage him from smelling people as it may seem rude but for everything else he can smell away !!!

"Only smelling Things and Family " is what we tell him.

I just want to thank the autistic woman who wrote "Quiet Hands" and made me feel okay about our practice of never discouraging R's unique way of experiencing the world  ( have you read this article ? if not please do !)

When I come back from a work trip, he will often smell my hair and say "Marriott " and in fact he will often be correct
I have taken to never using the Hilton shampoo.

It makes him feel betrayed as Hilton is a favorite

There is always the bad side of being hypersensitive of course and I wonder if his food-anxiety has to also do with smell

A tomato leaf - which he is equally fascinated by-  and insists I pluck and get from the garden -will make him cower( with hands over his ears )  like this

How interesting that a strong smell is like a shout !

His own developmental trajectory 


R is developing in his own way

5 years ago I would have thought that development would be moving closer to typical - but its not the case

R is autistic AND R is blossoming

Usually when we take R somewhere, we come armed with ipad etc - this weekend we had a hectic social calendar ( very unusual for us ) and we decided to go sans electronics to one of them

While it was not as easy for us as it usually is - it was interesting to see that R is more and more able to find other things to do- like play on the piano

Or make number patterns

Like this on my phone -

 here he is making a number pattern like he always did - but now he is using addition and subtraction - rather than just the numbers themselves ...

0+0=0

1+1=2

2+2=4

3+3=6

4+4=8

5+5=10

6+6=12

7+7=14

8+8=16

9+9=18

10+10=20

2-1=1

4-2=2

6-3=3

8-4=4

10-5=5

12-6=6

14-7=7

16-8=8

18-9=9

20-10=10

Or write out the Wii Menu in French ( I think)

Wii

Menu de

Wii

Wii

Menu

Canel

Tipemo

And

Camel

Noticas

Or make silly rhymes and giggle uncontrollably ( the fat rat pats the hat )

or making observations about how

"mom loves to read and eat chocolate and how lad loves baseball and soccer"( mighty accurate if I may say so )

A weekend trip 

We went to one of my good friends house- they have a river in their backyard which is so beautiful

We noticed with amusement how he would find areas of rest for himself - in this case the dog crate :-)

IEP 

We have a good IEP meeting - we are continuing with half special ed class and half mainstream.

I like our school - they are sweet and positive and try hard - like many schools in our area our resources are severely limited

We looked at some psych testing on his intellectual abilities - and the re-diagnosis that needs to happen every 3 years ( this is essential to continue with his support for autism

 How different this feels than the diagnosis at 3 - we are so much more aware now

This would have been hard to listen to , but the psychologist was really great and talked about how the tests are not very good

He also made many observations on identifying patterns that R has outstanding gifts in - while in reasoning he scored very poorly  and in math and reading he scored averagely

He observed that in one set of tests he just went down the list doing a yes-no-yes-no pattern- since he was bored with the test

He also said that he really enjoyed working with R and that the challenge will really lie in us accessing his gifts - because of all the problems of language

( DH and I made a mental note to write a social story on why trying your best in tests is important )

Whenever I write a positive post about school - someone will write to tell me how I need to take my rose colored glasses off - and the school will actually really be mean to you if you try to ask for anything

The thing is that I dont think we have rose colored glasses on - there really are very limited resources in our school district ( in one of the districts they thought that they would need to cut the school bus !!)

Our special ed teacher that we are leaving this year is AMAZING - I have seen her on a pumpkin patch trip literally carrying a child who had anxiety ( a tall heavy child too- not a baby  ) and was being clingy

Just the fact that R goes to school in a place that welcomes him, is something that DH and I  really appreciate

We all know he is bright and has many gifts ( like all children ) - though DH and I wonder how he will get through school

Still the trick of raising a child like R, is to remember that its his life and that our job is to help him lead his best life -( not our best life )

And to always wrap him in our love and approval

For to walk in the glow of your mother and father's approval is a lovely thing

Its to walk in light

Autism on Vacation

Vacationing – can be a time of stress for parents with children of special needs- as many of our kids are unhappy with change

Yet DH and I vacation and travel rather a lot !

We like going new places and we also think R’s horizons are broadened because we travel so much

Here are some tips from me  and from my friends based on many vacations we have taken

Managing  our own  expectations

One of the true pleasures in parenting is seeing our child experience joy.

However, we can forget that our kids have  a unique way of looking at things – what we imagine to be enjoyable to them, may not be.

I asked R the other day if he remembers where he was in Christmas last year

“Doubletree hotel !” he answered, a smile lighting up his face at the memory 

What he did not say was that while we did stay at the Doubletree hotel- where we had spend the day was in a place that is a dream destination for most children - Disneyworld’s Magic Kingdom

I and DH smiled at this today

But on that day, I remembered that feeling of disappointment when we had   waited and waited  to get in front of the crowds to watch  the once-upon-a-time parade and our child did not  gasp with wonder- 

All he did was to  remind  us that after this, he is “all done magic kingdom”

Plan some activities that your child will enjoy

In our case we usually plan to stay in hotels that R loves and that have swimming pools

Simple sensory activities – even if it’s a leisurely bath in the hotel bathtub will regulate your child

Patience

Find some tools that will help you be patient

You could even have your own mantra

“Repeat to yourself...He's doing the best he can…. Or say to yourself ..Sniping hurts his self esteem….Something that brings X’s   basic needs to the forefront of your mind so that you don't get panty-twisted by his actions.” Says Kellie

"The thing is, at least with Z, you cannot have any expectations. We struggle when we travel because DH and and L (and me, too) want to do everything we possibly can in the time we have wherever we are. But that's when I lose Z.”Says Debbie

Provide islands of sameness

We make sure we bring along R’s numbers wherever we go.

 At Disney he would often take breaks and play with the numbers and do addition and subtraction when the crowds got too much  

We also try to make sure he has his electronics

Though one friend of mine disagreed and says she likes to go vacation sans electronics

“On the one hand, it's their vacation, OTOH, for some kids like A, electronics are the surest way to shut down observation, mental engagement etc.
Here is my own bias : in years past I've been more liberal, and as a result, A shut himself off to everything because he was obsessing over the electronics, and the entire day became about having access. I don't think he can have a measure of "healthy use"- it's an all or nothing thing for us.
When we went skiing in the winter, I deliberately didn't take any level 1 obsessive handhelds - and that ended up being a good thing- since he didn't have his DS, he had no choice but to play with his sister, talk with his cousin etc. More importantly, after the initial disappointment, I really didn't get the feeling at all that the lack of DS was in any way detrimental to his self regulation or even good time (I had it in my purse in case of an emergency but never brought it out- to this day he doesn't know I had it all along).
This summer will be challenging for him because we will travel a lot- but I'm planning to do the same. He can take his i-Pad but nothing else. I will encourage him to listen to music instead.” Says Lillian

Keep  family visits reasonably short

 “Y is like a 2 yo with the motor skills of a nine year so he can do a lot of mischief if left unsupervised. For example, he make take someone's medication or use someone else's toothbrush etc. At least in my home, I have it under control and I have some form of respite with school or ABA. When I visit family I have to  be on him 24 7 for the whole visit” says Purvi

"We've kept our visits home short. I hate not to visit, but after a few days, we need to go. We usually stay with my parents, and their place is tiny, so there's not much to do if we can't get outside. I think we will try staying at a hotel next visit."  Says Ellen

Try not to feel bad  with those that don’t understand your child’s special needs

And don’t feel self conscious about the extra effort you need to take

“

Autism Civilians just don’t understand how it is for us” says Debbie

“ … no one understand that my kids are obsessed with electronics and insist on leaving them out everywhere… then they get mad at me when my kids are touching their phones, ipads, etc. No one understands how vigilant you have to be. Heck, we had a code Adam at the Children's museum and that was when we had 4 adults with 3 children. They mock me as a copter mom and think I'm ridiculous. And yes, Z has gotten into someone's purse and taken their medication” says Meg

Don’t forget yourself

Make sure to not to ignore your own needs and the needs of the rest of your family . 

You deserve to enjoy yourself too

“We have to say that I have a pretty selfish POV when it comes to vacations. We work hard all year , we have very little time off, so vacations are usually planned around what we want to do, not necessarily what is best for A . Because if it were up to him, he would never leave the living room except to go to school. Usually he hangs in there, often times reluctantly, when it comes to seeing new places (though we have been guilty of springing new stuff on him just because an opportunity came up- well....he'll have to deal with that once in a while too). 

I keep telling myself that the autism will still be there next week, but the (vacation place) won't.”

Says Lillian

Make it Easy for yourself

We used to stay with friends and family, but as of about 2 years ago it started to become really frustrating. All of the kids in our cohort were aging out of the "roam around the house randomly destroying or getting into mischief" stage while A is still in it full swing. So we do not go visiting as a family nearly as much as we used to. When we do, a hotel is a MUST.

A hotel obviously has far fewer chatchkes, everything can be cleaned or fixed. It is so much more relaxing for DH and I b/c when A  is over at another house, one of us has to be shadowing him at all times. He is so curious and well.... you know. … says Karen

Planned Downtime

"it’s like there have to be certain anchors in place. Landmarks. Rest stops of familiarity and even perseveration-oriented. Like the breaths in between the contractions and pushing, a time to catch your breath before you have to move forward and endure once more."

Says Deb

Plan a retreat area for your child

Many of my friends stressed the importance of an “escape area" for the child – a  place that they can retreat to if the pace feels too stressful

“I think I should bring his little pop up tent beause then he can escape when he needs too and still be part of our group vacation.  Says Danielle

 “We  must have a larger area. Although we are only a family of 4, we often try to rent a 3 bedroom unit so D can have his own space. “Says Amy

" Whenever we go somewhere, we allow L to scope out an area where he can retreat to have "alone time" to regroup. Sometimes it's his cousin's bedroom, away from the rest of the family. Other times, it's a bathtub in the hotel. Just somewhere he can go for solitude.” Adds Kellie

Make sure your special needs child has what they like to eat

Eveyrthing is less stressful when you are not hungry or sleepy

DH and I always looks for hotels or VRBO rentals that have a little kitchen and frig

“I think the key is having a kitchen or access to familiar foods. I don't believe in introducing new foods on vacation. Too stressful for everybody! “ Says Purvi

Priming

We never travel without planning a schedule

But even better are some of my friends who plan well in advance

"Priming is key . We showed Y a map of the Bahamas. I also showed him on a map that we will stop in Atlanta first. He was upset about the layover, but did a lot better bc at least he expected it. I also showed him pictures of the resort and told him there was a big lazy river." Says Purvi

Christine adds “I highly recommend social stories for firsts, like riding on a plane. I made a social story, including pictures of the inside of an airplane. I wrote about every detail from riding the parking shuttle to picking up bags”

Structure

Some kids on the spectrum do fine  without structure

“Traveling is a delight now. It's free time away from therapy, pressure, peers who confuse him, feeling isolated, and being corrected 10 million times a day. “ Says Kat

But for most kids a well structured day is critical

“I asked him to make a schedule for the day. He got to plan it with a little negotiation and we pretty much stuck to it. We even wrote down what we will eat for our meals.”

Says Purvi

Develop a thick skin

Remind yourself not to worry about any odd looks that people give you if your child

We only stop R from doing things that are truly rude or hurtful to him

 I try to think of the impact our attitude has  actions have on R and the kind of mother I want him to remember having

Then   the two people who are looking at him "oddly"  as he is making an eeeeee sound or cooing over a plastic number becomes a tiny annoyance , not something that actually hurts you

For me, when I feel that way, it is all based on fear. Mostly fear of me and my children being judged and fear of the future.
And for me, the only thing that has ever made a change in my interactions and in my real feelings is letting go of the fear. You let go of fear and you let go of the need to orchestrate, control, see the future, steer, guide, shepard, change, improve, etc. ,etc. ,etc

Says Karen 

This post has been written for Hopeful Parents and will be published their tomorrow. Floortime Lite Mama has been helped by her Autism sisterhood. Thank you Kellie, Purvi, Lilian , Christine, Kat , Kellie, Amy Danielle, Ellen, Debbie, Karen, Meg and ofcourse my DH 

Days of Spring

As if to compensate for an unusually dreary grey winter, we have been blessed with the most beautiful Spring

 Riot of color everywhere

How many shades of pink are there?

This

This

And these

In the cabin , the newborn forest is a beautiful color that R calls yellow-green

As spring will turn into summer the forest color deepens but now its this color

The lovely thing about the forest foliage is that it changes the color of the light 

I have been so enjoying my walks lately ( though R seems to have developed some separation anxiety once again and I sometimes find him not wanting me to go )




Outside Time 


When I run out of ideas with what to do with R - we just spend some time outside in mother Nature's sensory playground

Picnics are his special thing right now and we are taking this chance to make him pack the picnic basket , decide activities  plan where to go etc

We try to get him to make lists of what he would like to do

We go for lots of walks

We go to the parks

Social Thinking 

Since DH has been to the Michelle Garcia conference, it has really come to focus for how we need to teach R to pay attention to our thoughts

Here is R sulking ..

I think we screwed up his picnic- because DH wanted him to answer some questions

R loves to interact but completely on his own terms 

For instance, if you ask him question he will be silent Then he will try to distract you with a repetitive game like this -

R: Cabin go higher higher 

Then I have to say( complete with hand actions )  : Higher higher up higher higher up and down 
( replace cabin with other things  and go on like this ad nauseum ) 

Plus I knew he wanted Doritos - but because he did not pack them in the bag- I did not remind him

The point is to make him more responsible for himself


R sees the world completely from his own perspective( he is not selfish at all- if anything he is incredibly kind and cannot bear anyone being sad  - just he is not interested in anything that is not interesting to him )

DH has been working on this by simply asking this question

"What is Papa looking at ?"

This is a difficult question for him as he rarely pays attention to what we are paying attention to

Yet I do think he has the ability to think from other's perspective

For instance, he used to always set up furniture to steal candy .. but he would leave it there . Leaving proof of the crime

Now I see that he drags the furniture back :-)



Stretching Interests 

I have been using the Floortime technique of stretching interests ( like if he wants to go to walmart - I get him to pay attention to everything - our navigation system , what we see around us, the row number of where we parked, locking the car, etc ) These R-preferred activities are where he really has an openness of mind .

In these preferred activities - he  will answer questions in a functionally  ( he could not do this a while ago so we are very grateful for this )

But if its not on his agenda he will not answer the simplest question !

And he will sulk if we try to make him

With his therapists, he is much better

They are working with him on word associations and some of his association are really interesting and are giving us a peek of his very interesting thoughts )

Mrs G is even teaching him to play games - for example one of her games is that she will choose two cards - one card is an alphabet, while the other is the task to do. The other day she chose "H" and "Name a means of transportation"
Guess what he came out with

Not helicopter

But "Hang Glider"

He has also started getting interested in other topics like time, Seasons and weather.

( for some reason he belives that DH controls the weather and is very furious and does his angry dervish dance -  when DH does not make the clouds go away )





Autism Awareness

This is the month of autism awareness.

I have mixed feelings about autism awareness .

On the one hand - you cannot deny how wonderful it is when  a bunch of cafegoer defend a family with an autistic child that are in a restaurant and surely that is a result of awareness 

On the other hand, I am very tired of hearing how much autistic children "cost"... the word "burden" that comes up constantly...

While I do not  deny the difficulty that autism brings to life - I  also know that life can be very beautiful with autism in it

I worry that with what is being written about autism in the media - when a parent hears the word "autism" for their child- the imagine a child with a blighted life that will also blight theirs

I wish I could tell them about the amount a love and joy that an autistic child  can give you

I wish I could  remove the images of a child rocking sadly in a corner and replace it with an image like this

I simply cannot find words to describe how much we enjoy his company and how charmed we are  by his sweetness.

The other day I took a walk while he was with his therapist. She left the door open and a little later  he followed me on the path that he and I take on our walks.

When I returned home, I and DH ran out in a panic

I knew what he must have done( tried to follow me ) so I retraced the path of my walk

Sure enough he was walking down the route - he was distracted by the swing on a house and had climbed into it

I shouted at him in fury and he walked back with me tears running down his eyes

Later that night after he had undergone the consequences ( no screen time and no candy ) - I told him at bedtime about how scared I had been and does he know what could happen

He dutifully said "Car will crush . a monster will take"

I told him  "and  mama  will be very sad and keep crying"


R put his sweet arms around my neck and said "R no go to the road.. mama no sad"

With a child like this how could I be?

Social Thinking: Michelle Garcia Conference

My husband went to a conference by  the amazing Michelle Garcia  last week where she talked about Social Thinking

I did a Q& A with him on  this very important topic and thought it you would find it useful too .

 This post has been written for  Hopeful Parents


 What is social thinking?

Social thinking is a term coined by Michelle Garcia Winner an SLP and she defines it as ‘The ability to consider own and others thoughts, emotions, beliefs, intentions, knowledge, etc. to help interpret and respond to the information in your mind and possibly through your social behavioral interactions.’ 

Basically it means to be able to read social cues of others and react appropriately. 

This comes naturally to neurotypical kiddos where shared attention and intention leads to the development of Theory of Mind, which can be put simply as:

I Know

I know I know

I know You Know

I know You Know I know

What did Michelle Garcia’s conference consider to be the biggest challenges for children on the spectrum as they grow up?

MG feels that a number of challenges in the social sphere especially in the older children and adults can be traced back to undeveloped social thinking as a young child.

Older children have trouble with peer interactions, working in a group having fruitful discussions and being able to look at the whole picture. Adults have problems that arise in the workplace and relationship matters like dating etc.

R is a child with many good social relationships with adults but none with peers ?What were the top things that you would use for a child in R’s stage ?

R has strong relationships with us and other adults but it is primarily one sided. He is smart and knows that adults are useful beings that can provide him with the things he wants. He unfortunately hasn’t felt the need to develop a relationship with peers, which should change, as he grows older.

At his stage R needs to develop an interest in our interests – I mean he has now to realize that mama and papa have their own different thought and begin to show interest by observing us. Also at the same time realize that we know what he knows and so he doesn’t have to keep telling us the same information.

Basically at this stage we have to focus on creating joint attention, which is more than simply having eye contact. He has to be taught to see what the other person is seeing and then based on that develop the ability to figure out what the person is thinking. Finally using this to have an appropriate response in a conversation.

As R develops socially what would you want to implement in his home therapy program?

As R grows older I would like to develop increasingly interactive activities, one on one or small group, where he can be trained to look at and understand social cues and nuances (Michelle calls it listening with your eyes and brains) and then interpreting them to exhibit appropriate social behavior.

Other interesting things you would like to share and/or

anything you learned that surprised you ?

I think the most interesting thing was that we should look beyond simply memorizing skills to developing capacity. Just making eye contact should not be the goal but use it to listen to what the other persons eyes are saying.  The focus needs to be on the trunk instead of the leaves of the Social learning tree 

Autism and vacation

Last week we took a small vacation

Some bits were were great and bits of it were okay

On the great side, the weather was great ,the ocean was just magnificent  the apartment we rented from VRBO was comfortable and on the beach

On the not so great side................................................R does not really like change.

Like Sheldon Cooper of the Big Bang theory , R would say

"No, it's not going to be fine. Change is never fine. They say it is, but it's not."

 Plus he was also unwell ( Towards the end of the week we started to be incredible worried about this - always slim  he has become incredibly thin, had no appetite and then  we found out last week that he had giardiasis- which he is now being treated for  )

He was great in the long car ride and thoroughly enjoyed our stop at the gas station - I am always entranced by his pleasure in the small things ( like soda fountains etc )

The sea was just stunning and just a 2 minute walk away from the condo

Sunsets were stunning

We flew kites

had little picnics on the beach ( in order to take R favorite activity - picnics and combine them with the new thing- sea )

R enjoyed the sea under protest

With the gorgeous Atlantic ocean behind us - here he is asking me if we can go back and go to Kangaroo ( gas station with fountain drinks )

R and I have been reading a book called Se Shells on the sea shore .

This beach had a lovely low tide - the tide would take the ocean almost a mile away . I found it so dreamy to walk on ground that was inside the sea just a little while ago

We got to see walking sea shells ( the ones with the mollusks inside )

This is beyond magical to me

We left many large sea shells behind because they had animals inside them - while DH ate a  oysters for lunch - it still felt ethically wrong to take a shell from a creature ( like taking someone's home )

One shell stayed in our condo for almost 2 days - until I decided the creature inside was surely dead and decided to wash it in warm water and then the creature came outside

I felt so bad - but DH even though it was late in the night went to the beach immediately to put the shell back in the ocean ( at these moments I fall in love with my husband once again )

Though we did get plenty of shells ( most abandoned on the sand- dunes from  past storms )

What R enjoyed most about the trip were his familiar things . Plastic playgrounds

Restaurants

Knowing that family time was not really going to be awesome - DH and I gave each other plenty of alone time on the beach

Harbor Island, SC  is a gorgeous undiscovered beach with no crowds

DH read books and I took long walks

Felt the wind in my hair ( pics of me taken with my phone camera ) 

Listened to the ocean

Followed the seagulls

One day R was particularly whiny and DH and I were just over it - we wished he would just enjoy things and not always be so reluctant to try anything new out

R knew we were upset so though we took him to the playground ( 20 miles awasy as per his request ) - he sat quietly in shame

But then DH and I asked ourselves - is it really fair to expect him to enjoy the things we do ?

We went to dinner that night and R soothed himself with some math jokes

 He made an adorable little heart with 2 dashes and a 3 and said "heart go higher higher "- my heart just went out to him and I thought about how difficult it must be for him to have to always  want things to remain the same and not have that happen

While we cannot let his world become smaller and smaller - we need to expect and accept the fact that R does not like change but that still change is good for him

But should vacation be about relaxation or growth - I suspect it needs to be both

Next time we plan on bringing the Wii with us

As we got in the car and were on our way , I could see the stress leave R's body

He was in the car with his seatbelt on 30 minutes before we were ready to leave

And as we drove through the gorgeous South Carolina Roads

he was finally relaxed

He slept and DH and I discussed how we would make our next vacation more "successful" .

We should definitely go to a city and stay in a chain hotel( Hilton is his favorite )

As we got closer to his beloved old "new cabin new house" to spend the next three days and he woke up, I asked where he would like to go on the winter break

"Beach" he answered firmly

Accepting Autism

The other day I met a parent who is going through the initial diagnosis of autism

I found myself recommending the usual bibles of new parenting in Autism

You know .. "Son Rise" .. "Let me hear your voice" .. "The boy who loved windows"etc

There are thousands  amazing  autism books - why are these handful so popular?

I think the answer is that these are the cure books

These books  use the war metaphor

The enemy - autism

The warrior - you

The  victory - cure

These stories -the cure stories -have become the legend in autism land

The thing is ....I have never met a recovered child

I have met plenty of children who have made lots of progress though

Why is that not good enough?

I wish I could find something to say to a new parent that is realistic

That the cure conversation will fill them with energy in the beginning and drain away their joy with guilt and questioning themselves in a few years

That is about progress

I wish I could say these things and still fill them with optimism and hope(for there is so much to be hopeful about )

I wish our conversation would be all about helping our children and not about curing them of autism

"Every parent of a child on the autism spectrum knows this feeling: I've done everything possible; why isn't he better? The answer is simple: Because this is the way autism works. There are roadblocks in the brain, mysterious and unmovable. In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures."

Autism's Parent Trap , Cammie McGovern New York Times, 2006 

I write on the Specialism website of the amazing Danette and Tiffani on this topic here