Sunday, June 5, 2011

What we did in May

I have been absent from the blogosphere for about 3 weeks now . Too much work .And too much life happening. Promise to visit all my dear bloggy friends this week and catch up 
I did take pictures on my phone  this month and so I am writing about it month while I still remember, for the sake of reminiscing  later.

IEP meeting

We had an IEP meeting at school. His overall plan is good

  1. Half regular ed with shared aide and
  2. Half day special ed with two teachers - both of whom we really like
DH and I think this makes sense

The most important  accommodation we are hoping to work out - is that he come to school late to he can do his speech therapy in the morning. We think we will be able to arrange this

Evaluations

This has been VERY painful as he tests HORRIBLY

 His teacher showed us some test results - painful to read

Example he did not answer questions like _6_ .. as in what comes before and after 6  ( he has known numbers since he was 3 !!)

Glad his teacher sees his strengths

She said rightly that there is an intelligent child in there - but that academic success is about how well you present. And not what is in your head

Much as it is painful - she is absolutely and completely right

Reading comprehension

In terms of just reading - R reads at the 2nd grade level - but his comprehension  of sentences and concepts is poor.
 I talked to some of my friends and Reading Comprehension is really one of the biggest problems ( whole post coming up later on Reading comprehension )

We reminded our whole team that R has only understood language for the past one year and so to think of his comprehension issues as a 3 year old and not a 6 year old

Once reminded, they were all amazed at how far he has come. Its amazing how quickly we forget the challenges we have already overcome and get fixated on the challenges yet to come.

Its his ability to travel that we need to demonstrate.

 I think everyone - even educators custom their approach on perceived capacity to learn and that is why we need to always show that his ability is great

Tonsils surgery

DH "spontaneously" decides to get his tonsils out . His doctor has an opening that week and the schedule it right away

I read about tonsil surgery recovery on message boards and hear about how painful and horrible it is .

 I plead and plead  with DH to not have this surgery but DH claims those people are "wimps and pansies" and have "milk running through their veins".

That all I need to do "drop him back home on Friday after surgery and  just go back to the office after that".

However after the surgery - we realise that those people were not wimps and pansies after all and that their describing this surgery as the "worst torture anyone could go through" is actually rather an understatement.

We have a difficult week as DH is in a lot of pain and  I have to do a lot of things that DH does ( like grocery shopping, carrying laundry here and there, getting R ready for school etc )

Though its difficult there are many funny moments too. Like one morning, when I forget to call in the day to check on how he is as I am running from meeting to meeting, I get a voicemail from DH which goes like this "

"if you are done putting the man on the moon, maybe you could  find a few minutes to call to check on your husband".

My big strong DH is not usually prone to self pity( that along with a tendency to martyrdom  is usually my thing)  and this voicemail makes me laugh till I cry

The start of summer vacation

How can I describe the glow on R as soon as school is over?

I think being home with DH is one of the most therapeutic things for R.

DH is one of those people who carry a very calm, soothing and accepting atmosphere.

The thing that worries me is what will happen when school starts - its an even longer day and I just wonder if it will wring out R

Though I love his teacher, school is becoming a great source of anxiety for me .

I wish there was more flexibility - that we could do school for 3 days and a kind of homeschool with therapists for 2

Its difficult to leave home everyday as he watches from the garage door dolefully - can you see him standing on his toes watching me leave sadly ?



Mother's day

One of R's therapists gets him to make a Mother's Day card - she writes down a social story about Mother's day
I adore this card and stick it on the wall and R beams with pleasure



Play and Language

His spontaneous language is coming along great

The other day his PT was stern with him and he told me later when I asked him  mean and mad"

When I asked him how that made him feel , he said  "worried"

This is really great language expression for him

His pretend play skills have increased a lot

He goes around finding spider webs and singing "Little Miss Muffet " to them

He plays out his version of "The wonderpets Save the Dinosaur " by trying to get me to rescue bugs of all sorts who are "trapped " in spider webs . We must sing the wonderpets song and rescue them

One of the "Little  Einsteins" story he loves right now is about a little totem pole that gets "build upon"  and becomes a big totem tale thanks to the shenanigans of the and he replicates this with megablocks
This is his version of the "Tall Totem Tale "


Music

One of the things R loves most is music and song

Earlier it used to be me who would make up songs for him and now its he who is always adapting

His current obsession is "Coke and Sprite" ( no idea why ) 

There are also some super geeky parodies on youtube that R watches regularly ( the guy who put up that video must be wondering at the great increase in views :-) )

He also takes basic songs that he will sing to the different words

For instance if I take the tune of "There was a farmer had a dog , bingo was his name o "

and take it to "there was a green bottle with sprite.. sprite was its name o "

he will quickly make the same song about Coke and Fanta

His music interest is burgeoning as this week he goes to his teacher and play a tune ( Mary had a little lamb ) that she has never taught him but he learned from Nick Jr

The other thing I am pretty impressed ( but I am easily impressed by R ) by is how he notices the patterns of music. He keeps organising songs by tunes.

While a sing to him all the time - I have never noticed this until he points them out ( like the ABC song, Twinkle twinkle little star, Baa baa black sheep - all have the same tune )


Engagement

His general engagement in life is great right now. The other day DH and I are bickering in Walmart ( stupid AT& T has bad coverage and we cannot find each other ) .

R for the first time ever - takes my hand in one hand and DH's in the other and puts our hands together -

He is constantly dragging me everywhere with him ( another reason why I cannot blog ) to do experiments like learn about shadows by looking at the shadows of numbers
( I really love this )

He still expands in breadth and not in length -

like if he has a theme going on - where all the Little einsteins get into the rocket to fly away in a mission - that is where the story ends .

If I introduce an idea - like get a bunch of "umbrellas"  from DH's bar ( very enticing I think- colorful perfect replicas of umbrellas  ) and say that The Little Einsteins have landed on a rainy island and need umbrellas - he will promptly reject my idea

This is the crux of Floortime - to have a long unpredictable exchange.

You start with their interest - but the idea is to take the exchange down unpredictable paths and have the child come along

What I am noticing however is that while he rejects my idea at the time - he will try it on a little later .

So later that afternoon he takes the Little Einsteins with unbrellas .

And this morning he informs me that "rain and umbrellas go together"

I think Autistic children have many ideas and thoughts and its us that are not usually able to see

I think if one has an NT child or has had spend a lot of time thinking of and longing for an NT child - its hard to see the beauty of the special needs child .

Its like the son and the moon.

And how you cannot see the moon when the sun is out bright and shining

But for DH and me who have only known our autistic son .

For us there is no longing for the sun , we revel in the beauty and magic of moon light

I wake up in the morning with my head on DH's shoulder and hear a small doleful voice at my side

"Mama is hug Papa .. papa is hug mama"

The child hates being left out

DH pulls him up between us and he says "mama and papa hug R"

My little family

My circle of love

24 comments:

Apples and Autobots said...

I agree that it's so important to remember how far you've come while you're planning for where you need to go next. R and my Tinkerbell seem to be in the same place when it comes to play. And the business about your big, strong hubby's tonsil surgery cracked me up! Glad your back!

Mr. Daddy said...

Have missed you K, :o) The things you write about apply to so much more in life than just life with a special, special needs boy. thank you for your insight and sharing, you are a blessing in so many ways. As one who has milk running through his veins I was dyeing with laughter at your comments about your DH...LOL

Nice to have you back blogging :o)

Lizbeth said...

I love that last little bit at the end--priceless. My son does the same thing with music--sorts it out by tune, and type. It calm him like nothing else can.

I'm glad you posted this.

KWombles said...

I hope your husband's doing better now. Glad to read this update. :-)

robin said...

I've missed you! I'm glad school is over for R (my kiddo is super excited for summer as well!) Hope your DH is better now. I love that R put you hand with DH at the store! :)

Trish said...

So much happening! I like the half and half school arrangement - I so wish we had done that for Michael. Oh, and I remember him putting our hands together often - it was always so sweet that he wanted Mommy & Daddy to show we love each other.

I hope you can have a bit of relief from all the stressful stuff for a while and just enjoy your family time again.

Alysia said...

I love this post for so many reasons. I hear the hope and joy come thru, even when you're facing challenges. Our IEP meetings sound similar. We know he can do the academic work, the challenge becomes making sure his teachers can see he can do the work. I hope for a nice relaxing summer for you.

Lori said...

Gracious! My heart is with you, so many things happening at once! IEP's leave me frazzled and evals leave me frazzled with insomnia.

Your post rings with resilience, strength and sincerity. Your tenderness and commitment to your child touches me. Bravo, girl!

Lori

Julie said...

oh my gosh! You guys make me laugh. (You and your husband)...

We struggle with the reading comprehension too. I look forward to when you write more about it.

...and I came over here today hoping for a dose of positivity. I'm having a hard time with D and things right now and I WANT to see things in a better light. I WANT to be positive and I just don't know how to change my way of thinking. Sometimes I feel that between C and D we get the best of both worlds, but right now C is (relatively...it's different) easy and D isn't and you're right- it's hard to celebrate the moon when it's being outshone by the sun. :( I really hope this is just a phase because I hate being a bummer.
<3

Rachel said...

We have so missed you!

And would you believe my husband laughed so hard about the tonsils recovery (not the pain, but rather the approach), that he came and TOLD ME ABOUT IT before I could read the post?? hee hee!

Glad everyone seems to be well recovered. I too love our little circle of love!

JD in TLH said...

Love, love, love "the circle of love". We have "family hugs", too, where DH and I hug and hold DS in between us so that we are all just hugging. Just us. The mean, insensitive world stays out, it is just our little family.

Of course, this was easier when he was smaller (5 now, soon to be 6), but I swear I will have those family hugs even if we have to modify them (horizontal family hugs on the carpet??)!

Þorgerður said...

"Its his ability to travel that we need to demonstrate." This exactly.

Hope your hubby is feeling better :)

TherExtras said...

You had me at "What" but I will have to read this in installments! Too late here and I must get some sleep and I will not try to say I've been any busier than you but I will say our schedules are comparable!

I love your every word each one conveys love. Barbara

TherExtras said...

Ah, you never fail to provide a sweet and touching post, K. Thanks so much! You have a loyal audience who will wait however long to read your words and know your circle of love vicariously. Barbara

jazzygal said...

You have indeed been very busy! I hate when real life gets in the way of blogging... how very dare it! Welcome back.

Great to catch up with all that's been happening. You're poor hubby... and you!

Your lil guy seems to be really coming on. A 'look back'post like this really helps to see the improvements.

re: the academics? True but it's the education system that needs to adapt to accomodate our kids so that they CAN present ;-)All in good time....:-)

xx Jazzy

News said...

so nice blog... i like it...thanks for sharing

jazzygal said...

Hi, I'm just about to tag you with an award. Hope you don't mind? It'll be posted very soon!

xx Jazzy

K- floortime lite mama said...

thanks so much for the nice comments - you guys are so nice
Jazzy gal tag away - i am always delighted to be tagged - just VERY slow to respond

The mum of all trades said...

Just found your blog through jazzys link. you have some very interesting posts and I have enjoyed reading them. I teach special ed part time so can identify with many of the topics in your posts. your little boy is such a beautiful child.

Brenda said...

Loved the part abt your husband: man on the moon! At least he has a sense of humor about it!

Hate that IEP and testing business. R is much more advanced than Jack on reading and spelling, but you know what? I don't care where Jack is on skill & drill. We are learning about life. 'Course being a homeschooler (or really unschooler) I have to keep repeating this over & over to myself. Yes, we're "behind" other kids at school - we will always be on a different path. It's up to me to be ok with this.

Love, love the making up his own songs thing! Jack started doing that, too, at some point and I thought it was hilarious.

D. S. Walker said...

Wow! Such a busy month. I hope DH is now in good health and your summer is going well. I love the story about the hug! :-)

Queenbuv3 said...

I really need to know if having your tonsils out as an adult is worth all the pain and torture I've read about. I am suffering from a tonsil headache as we speak. I have cryptic tonsils and the one on the right has a giant hole in it and I'm sure I don't need to tell you about the whole tonsil stone drama. Anyway, I really need to get them taken out and I am terrified to do it after reading all the horror stories abou the pain, potential for bleeding, weight loss (really can't afford to lose ten pounds), etc. I've talked to one person I know that had it done and she said it was worth it and not that bad for her. Does your husband think it was worth it? Why did he have them removed? Thanks : )

K- floortime lite mama said...

DH said it was worth it and he did not lose weight either

Amy said...

I love your blog and will return as I can. Thank you for visiting me in cyber-world, and for the positivity.

Floortime Lite Mama

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