Sunday, April 17, 2011

The beginning of April

Here are some of the things that happened in the busy busy month of April

Team meeting and change in home therapy program

One Sunday DH and I sat down to plan what we want changed – we took a big blank piece of paper on top of which we wrote " I WISH "

We made a list of all the things we wish for for R

We went over our lists and basically it boiled down to be able to communicate more

  1. We want him to answer questions
  2. We want him to ask questions
  3. We want him to be able to talk about a topic
So for example a therapy session could go like this
  1. Look at a picture and describe it
  2. Choose a book – read it and talk about it
  3. Take a walk and describe things  you see
  4. Go somewhere take pictures about that place and then talk about it  
  5. Play with a toy scenario and talk about it
We want to continue with teaching him some specific social scripts . Some automatic social greetings. Some basic info about himself ( for safety reasons )

Our awesome therapists are all keen and willing to try this plan out –All of them have know R for atleast half his life and they all know that his needs are changing

In the middle of the meeting – R comes in – and looks around trying to find a place and observes sadly "no chair for R "

This is so cute that we fall over ourselves trying to get him a chair !

Once school is out we want to have a more intense ( more hours ) at home and want to take on some academic Ist grade stuff as well - the idea is to teach him how to do independent work – with work sheets etc
Independent work at school seems so daunting – yet I have to remind myself that 3 years ago he did not know what his name was

Play date

Some close friends of ours come and spend the weekend –

Spring is here and its all warm and wonderful this weekend

We have a marvelous time and talk late into the night

They have two daughters – one who was in fact born the same day as R

These daughters are just AMAZING – being just a year apart they are busy playing together all the time

The first morning they are here, R figures out that they are not bothering him at all – they don't interfere with his two main interests – the computer and the Wii

By evening HE is interested in playing with them and when we go to the park he insists on riding in the car

For dinner we go to Corky's ( yes a nice dinner out means Barbecue to us who have adopted Southern culture ) – while returning back to the cabin – R insists on riding in their car- this is a huge surprise and I don't know how he will do

When we reach back to the cabin – I tell Kelly how surprised I am and how he has never done this before – and she says she is very honored

She says he was totally fine and in the middle when Dave pointed out how we were driving in front – he suddenly started to laugh and then everybody else joined in though no one knew what the joke was
( this Iam familiar with as I have done it before – R starts to laugh at some secret joke and I though I have no idea what the joke is cannot stop laughing either )

Their daughter says she is the source of R's laughter as she was "constantly kicking his chair to keep him company ".

 Such are the simple ideas of companionship that small children have

The grown ups chat with glasses of wine and the kids all get stuck to their screens

When they leave we are very sad – though they give R their guitar since he was VERY enamored by it ( which is why now the boy has a bright pink guitar )


Has continued to be weak

Sometimes I cannot find the energy to play , sometimes R is too exhausted –

sometimes we are playing but both of us are too tired and get stuck – For instance here R – we are playing with the Ferris wheel set of Little people – and R is stuck on the fact that the Santa doll is not sticking firmly to the seat.

Now the sensible thing would be to use that as a beginning point of a dialogue – but of course I do not!

I have been traveling a lot and R has had bad allergies .

All winter I spend yearning from for Spring and I forget completely about all the allergy issues

One night his eyes are so swollen – he cannot open them at all – he cries and cries( I am sure it must be so scary to suddenly become blind ) but of course it makes things worse– and I spend the rest of the night comforting him

Nowadays I find that I can no longer take leave home at 5.30 am and return at 11 pm with a full packed day ( which is what a day trip to Cincinnati/Chicago/Detroit looks like ) – though I still do it.

I am drained and exhausted all week and feel like I cannot catch up

R does quite with these day trips as long as he has a detailed schedule – DH is completely able to take care of him by himself ( Of course  R really is  easier to take care of than he used to be- there was a time when he had to be carried every minute of every day  )

Though – he gets so thrilled when he gets into our bed and finds me that he spends the rest of the night periodically at clutching at me in an paroxysm of fondness - which means we ae both very exhausted the next day

We are driving down to Georgia this weekend, to  resume sessions with our Floortime psychologist next weekend – and I am hoping that will re-energize me and get me back some mojo

Fun In spite of all this fatigue - its not that w are not having fun though

DH and I have discovered a new addiction – The Sopranos – and we are hooked !

On the surface this is a show about the mafia – but really it's a study of the human relationships and the human psyche and its contradictions

R also has discovered two new thrills

The first is a paid subscription to get to "more starfall" – R is just loving this website . He has been asking for it. I have been hesitant because there is already so much on you-tube.

However – there is this page which has a list of number – where only "1 " is clickable and does various antics - the rest of the numbers are grayed out .
This of course is to tease kids like R!

I finally go ahead and fork over the $35 and am immediately mother of the year

Another attraction ffor him are all the free apps ( free this month because of autism month ) from kndergarten .com that I have downloaded –

Excellent quality – especially since we are looking to get him to answer more questions – which is the format of many of their apps( what does not belong? what does what ?)

I have been listening to loads of books on I-pod myself – I am really enjoying the "Mr Monk' series –  I feel that Mr Monk has Asperger Syndrome

Besides these pleasures, there are few places on earth as beautiful as Tennessee in the Spring

and everywhere you turn there is much to feast on

Dogwoods and redbuds are in full bloom ( the background picture for the blog currently is from my neighborhood )


I know I have mentioned this before,  but R has a few very loud children in his class

( all the kids in his class are sweet and mean no harm – its just that the noise is hard for a child with issues with auditory defensiveness)

Anyway his fabulous teacher has written social stories – one of the stories is about a child X who has cerebral palsy

In the social story the teacher is trying to tell R that child X cannot run, walk or play like R and so he expresses himself in the way he can

All this is true but my heart breaks for X and X's mom and it makes me cry

I wonder if my friends with Neurotypical kids worry for me like this-

While X's mom takes it in her stride like I do

The last time I went too the dentist – in the Hygienists' office , I saw that there was a picture of a girl in a wheel chair – who I recognized from R's old school –

I asked about her  and I mentioned that my son was in that school when he was 3 due to Autism

She told me that he daughter had brain damage from her being in a car accident in her 7th month of pregnancy and the fetus being deprived of oxygen

But she too referred to her daughter as her sunshine ( not unlike the way in which I call R the human Prozac)

I think there is something very unifying in the shared experience of parenting kiddos with special needs ( or maybe even just parenting )

And all my prayers that night are not for me and mine, but for X and his family

Sometimes its hard to make sense of the unfairness of life – especially where the suffering of little children is concerned

But even with all its unfairness, life can still be very beautiful

And parenting can have many many joys, no matter what difficulties we face. Perhapes this is the way we all feel about the parenting expereince no matter how difficult it looks from outside

"[He] gave me eyes...
[he] gave me ears;
And humble cares, and delicate fears;
A heart, the fountain of sweet tears;
And love, and thought, and joy."
- Wordsworth


Rachel said...

It's all perspective, isn't it?

Right now, I am finding that I am consciously, purposefully seeking out those things in my life which I need to be grateful for. To intentionally not take them for granted.

And I love your little human prozac too :)

Kim Wombles said...

I love the new backdrop and the photos, as well as the update on how things are for y'all.

Anonymous said...

Such a busy month, isn't?! Thank you for sharing! I find it comforting/helpful to hear that I am not the only mother who feels exhausted much of the time, and I too have let our therapy sessions lapse. Though we do incorporate ABA into our daily lifestyle, my more formal sessions have gone by the wayside as of late. I am hoping the warmer spring weather will motivate me to step it up!

I love your beautiful dogwood background! They are my favorite tree! Happy spring to you (despite those pesky allergies!)!!! :-D

Mr. Daddy said...

I just love the section on laughter. isn't it great that sometimes there doesn't have to be a joke? That laughter just bubbles up from within?

through all the pain of these last few weeks Laughter is what has banished the despair.

thanks for sharing K. you have such a lovely way of looking at things.:o)

Lizbeth said...

You have showcased the beauty in life so well. I am in awe.

And the pic of the kiddo's in front of the computers--classic!

Anonymous said...

Bless you and thank you! So sorry to read about R's allergies. Many suffer from them here, too. I am a big believer in night-time humidifiers to alleviate upper respiratory congestion.

Oh, I hope to read another post in the next 2 days - something about 'readiness' - hint, hint.


Lisa said...

Life is about seeking the positives.
I love your posts K, they make me smile.
I love hearing about R, and your family.

Watch Nurse Jackie!
Trust me you will love it, the characters are quirky, raw and I am addicted to this show!

Lynn said...

We are currently working so hard on conversation with Audrey, so I totally understand your goals for R. It is still such a challenge for her. Your spring looks waaaayyy more beautiful than ours up here in rainy and gray Chicago. LOVE the Sopranos...and I so agree with you. People get caught with the violence and mafia theme, but it's really all about family dynamics and it really was the best TV series of all time in my book.

Anonymous said...

I have missed catching up with you. I hope you've had some time to recharge. I didn't know starfall had more if you pay for it! We shall have to check into that! :) Have a wonderful weekend!

danette said...

I'm catching up... love the part about R laughing and everyone laughing with him even though no one else knew the joke :). That is just precious... my guys do that sometimes too and it is impossible not to laugh along.

I hope R's spring allergies are starting to ease up, bless his heart!

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