June in Seattle

And I meet, coming through the dew

Another summer's Day!

-Emily Dickinson

Dear reader- where I live in Seattle people have warned us about the treacherousness of  June

"June is better known as Junuary... bitterly cold"  we are told

But June has come bursting with golden days.

Outside 

We spend as much time as we can outside

So many interesting things to discover in our city.  Its as though this city of constant rain knows how to make the most of the 3 months of summer - so everywhere you turn - there is a park and a lake and a little place to sightsee

And

R is nothing if not a creature that loves tradition and every evening we are at the park to swing and have a little picnic of junk food 

A Sense of expanded time

I tell people that my 30's will be marked with just one factor -

A  starvation of time. 

The 40's dont look like they will be much better 

Needing more time, wondering where the time went, gasping at how fast the weekends go by, trying to multitask ( which we all know does not work ), trying to do things faster, prioritising etc 

These days I have found a new way to expand time 

Which is to pretend that I have loads of time. 

This really really works 

Next time you have 30 minutes to go to the park, each minute act as though you have endless time 

I look - really look at what is around me

I notice the bits of magic and whimsy all around me

I notice, this child's endless love, how when I push R in the swing - he puts his hand behind himself so I can low five him each time he swings to me

I learn from R as he stops  and smells the roses

 Oh I have so much to write and so little time

But if I dont write, I will forget all about this special time and all the little things that made it special

1. That DH and I are addicted to "The West Wing"
2. The we eat a lot of mangoes and broccoli
3. That R loves to match his clothes these days - his blue pJ's with blue green socks and blue shirt and his pink shirt with his  Red PJ 's pictured above
4. That these days we read poems at bedtime. Since they are from the days before political correctness - they are really quite inappropriate
5. That we have drunk more Expresso these past few months than we have ever done before
6. That I no longer ache( at least not all the time )  for my small southern town and am starting to feel settled
7. That DH plays again ( squash )
8. That DH had a massive impressive meeting proposing homeschooling and the support we needed from them  ( by showing exhibits of his work - that in school R was counting 1-5 , while at home he was doing factors for multiplication )
9. That R loved butterfly cookies

And a million more things that matter ohsomuch to me

So here I am dear reader, writing from a W in Chicago after a 14 hour work day

For if I dont write, I will forget what happened

“If you want to live a memorable life, you have to be the kind of person who remembers to remember.” — Joshua Foer

The Last days of May

A weekend with friends

Our friends from Canada visited us

These are DH's friends from Engineering college almost 20 years ago

We have made a pact  we will pretend not to notice the many extra pounds

We all tell each other that we look "EXACTLY " the same

(Though to be honest an extra person could have been created with all the pounds we have collectively gained in the intervening 13 years )

They live in Canada where the wife is a doctor and the guy ( DH's roomie from engineering days ) works as an engineer

They have a teenager ( extremely sweet ) .
 Very self possessed  - and all we saw of him was the top of this head over his laptop where he was communing with his friends over games

She does Hospice now and it was really interesting to hear her stories

One story was about a 52 year old woman who is passing away and who is trying to teach her 4 sons to be self sufficient

Her husband also died of cancer a few years ago

52 years !

I will be 52 in only 14 more years

I wonder what I would do if I knew I had only 14 more years to go

!!

The little girl ( Canadian friends' daughter ) was very sweet 

R was - at first jealous of her

( he snatched his paintings from the frig and put them away )

But when he noticed that she treated him with respect - he quickly realized that he really  likes her  ( finally someone smaller and hence  lower on the food chain than him !!)

Now is always asking for Chloe



A neighbor's birthday party

R LOVES going to birthday parties

We went to a neighbor's party - they are soooo sweet - they invited R to get in line for whacking the Piñata , guarded a few sweets for him daily

As soon as we came home - R insisted I make cupcakes

Meeting Temple Grandin

One of the cool things about working for Microsoft is that some days Temple grandin comes to give a lecture at your company

Now that I have attended one of her long conferences , heard her on Ted Talks and read all of her books, I find that I have pretty much heard everything she says

Still  I  get something new out of it - even when its a reminder ( this is why conferences and trainings are important because they shake us out of our inertia )

Two things
1. focus on practical things also - like shopping etc , ANY kind of job experience
2.focus on academics - for visual thinkers ( her brain scan images were fascinating -google usa today Temple grandin and see above for the picture I took of her presentation) things like algerbra are impossible - so skip it

Pattern thinker

I am always astounded by R's impeccable memory

Was astounded to see that he remembered a lot of our cryptic internet password as I saw him trying to put it in the wii

As I was organizing his toys , I was just struck by how many letters and numbers we still have


How much he still enjoys them

His number intersts have become more compictated - here he has painstakilnly taken photos one by one ( this is the  album view on my phone )  of even numbers

Here a pattern of division

Here he has made a series of animal that are in the sequence of the alphabet

 If I see a bunch of random cards there is usually some thought behind it

like here - this mess on our dining table is actually multiplication cards and he has just picked out the 4 series

Getting Normal

DH and I were talking the other day how we have been in a "state of emergency" for the past 12 months .

The pain of leaving Knoxville, coming to a new everything and then R's long illness

I am so ready to start feeling normal and that is what I am practicing

These days as I walk inside the house , I say to myself

Today I will Floortime
Today I will clear up
Today I will have a normal evening
Today I will watch TV

When we go to the park, I do our usual routine of swinging etc

But I also play little games

At the park I laid down his number cards - I told him to memorize the series - then I turned them around and I pointed to the back of the number to ask him "which number is it "

With his bed time tales I got the little people and made them act out poems

At the gym - we play bouncing games together

 Homeschooling

We are finally moving to homeschooling ( a version of it )

DH and I will be planning curriculum and R will spend his Fall hours divvied up between

1. Hometherapy
2. Therapy at a center ( 1:1 ratio)
3. Services at our neighborhood school

We discuss this at our team meeting and all of us feel that this is the right way ahead for R

In our hearts, DH and I agree that it feels right as well

There are years that ask questions and there are years that give answers.

This past year has been the former

"Were we right to move?"

 "Why must our child have one more mystery disease? Are SPD , Apraxia not enough?"


But as the team meeting ends one of our therapists says

 " I like coming to your house.. this is a happy house"

Another adds

"Your house is my happy place"

And I think maybe this past year was not so bad after all  

10 Tips for Better Hospital stays

Blogger  lets me look at what people type in when they travel to my site and along with the “floortime” “floortime mama” but then some make me very sad “Husband wont accept  autistic child” “ “Child wont talk” and I feel such kinship  for the lonely fingers typing those words on another end of the internet

These days some people who arrive on my blog arrive after having typed in “hospital visit for child ” or Crohn’s

When we were first getting admitted to the hospital in February – I hunted for a something on the internet on how to prepare for a hospital stay. I really found nothing suitable

 So here I write this post specifically for you -unknown mum or dad -about how to make a hospital visit more bearable

Since R goes for infusions on a pretty regular basis, DH and I have the dubious distinction of some expertise in this area

1.       Explain why and keep it simple When possible explain simply why you are at the hospital. We told R simply that we were there to make his belly hurt go away . That the doctor needed to look inside his tummy to see what was wrong

2.      Be aware that your child is hearing what you are saying. We found R looking up “Crohns disease in children” and “Remicade” on Wikipedia – not necessarily what you want a child to be reading

3.      Make a schedule and tick things off on the schedule. Most of the time children do not get why they are in the hospital or why things are being done to them. When things are being ticked off a list , it gives them a sense that they are making progress and that there is an end in sight.

4.     Bring some home to the hospital. Take their and your ordinary clothes with you – I know R found my tatty nightgown and snuggling up with his bedtime story book – a signal that things were okay and ordinary – even though life was far from ordinary.

5.      Go to pediatric units – Pediatric nurses are the finest creatures in the world and they think of things like kiddie videos that regular nurses won’t think about

6.      Treats for Hospital Day If you need to go on a regular basis to the hospital do some special things that are reserved just for hospital day . In our case, we eat pizza at the restaurant , do elevators, watch some special DVD’s, unlimited video games

7.      Don’t cry in front of your child. Seriously, no matter how hard it is

8.      Prioritize physical comfort. Example, if your child needs an IV,Nitrous is very relaxing, . Numbing cream can make all the sting go away. Make sure your child is warm.

9.      Distract your child – The hospital where we go to have a Wii Console – Every other visit, R has whined about getting the IV out and being “all done”. This time since the Wii had many new games, there was not a peep out of him

10.   Treat your child the way you want others to treat him. Most of us are really good advocates for our kiddos. But I think we need to go one step more than that.
We need to treat our child with a special tenderness, treating their fears with respect.
This means for example that when a nurse jokes “oh he is going to fight that IV”, we don’t smile along with them.
If you think about it – these sorts of statements are deeply disrespectful to our kiddos.
 Now I say something like “I would too if I did not understand why”.
Even though they did not mean any harm in the first place – there is a subtle shift in the energy of the room. R does not feel like mum and dad and nurse are on one side and he is on another. And the nurses treat him differently

Hospital stays are never fun. But I hope these tips make them a little more bearable 

This article has been written for Hopeful Parents and is published there today