Friday, July 3, 2009

Week of June 29


R decided to wake up at 2 am today morning . I was very very grumpy as a result and snapped at him. With no sleep and mom angry, he was all set for a bad day

I send him an apologetic email with hugs and kisses and got DH to show it to him

I took 30 minutes off from work to go for the music lesson and also took along some WONDERPETS crosswords as a peace offering – R was very very stimmy and wanted full control of the piano and had NO interest in learning the tune that Miss P was trying to teach him. She claps her hands a lot and I think this is an additional distraction for him. She plays SO beautifully though and he was entranced every time she would play something.

But he wanted full control of the piano! When he does not want to do things he became giggly and hypotonic – limp in my arms, lying on the floor . He is the master of peaceful protest.

I think I need to get his piano ( one of those cheap electronic music keyboard) out again

We were very sleepy in the evening – And do dinner before we went outside which was very good

We jumped on the trampoline a lot – Taking turns is something he does not do – but we hold our hands together before we start to jump and we chant something

So I decided to do the numbers and take turns with that – So I would say 1 and then R would say 2. He caught on immediately and we started jumping at 20



When I drove home – he wanted to get in the car. Because of the show Turbo Dogs he is really fascinated by all things with wheels but especially cars

Anyway we snuggled for a little bit – he had Sneaked DH's remote ( as we have DVR – the remote is the most powerful of all attractions for R )

He dropped It on the floor of the car which Is the same color as the remote . As we had been talking with Danette about Visual Spatial Processing – I let it be to see if he would remember it . Of course he did . All his challenges disappear when there is something that motivates him truly.

DH went for golf and I gave R a snack which he did not eat but I knew he was hungry

He threw a first class tantrum when Miss E came for his ABA in the evening –( I mean one of the worst ever) – falling on the floor crying etc- I figured later we had not done our whole snuggling routine. I guess some snuggles in the car did not count

But even through his crying- he did his entire routine which is very funny .

I was very upset at his crying. I want him to enjoy all his therapy and he usually does. Also his ABA is not the usual kind of ABA – there is literally 10 minutes of discrete trial and the rest of it is all natural environment – Very different than the ABA he used to get earlier

After therapy is over he is very irritated still and I actually let him have the remote – I show him 2 schedule options and he chooses dinner first – but when I bring out the real dinner – he starts to wail again. I hug him and lead him to his PECS book. He picks out –his sentence stick and arranges the letter – "I want Cookie "

Okay so he wants to eat but not veggies and meat but junk

I give him a couple of pieces of cookies and then his dinner . As soon as he eats dinner he has turned into an angel!!

He has started to paint with watercolors ( just scribbling really ) but I am very happy about it – though I teach him dip brush in water – then in paint and then on paper . I notice him doing this meaningless thing- dip brush is water and then put wet brush on the different colors in the paint palette.

I lament at his lack of Executive Function and then suddenly I realize that what he is doing is MUCH smarter than what I taught him. He is making all the colors he plans to use wet – basically converting them to liquid color before using them . Also I think he enjoys how the color palette itself looks so much better when all the colors are gleaming and wet )

As always his unique perspective makes me think how much these different minds will help us look at things in different ways if only we keep our minds open to it

We do our usual sensory routine

This time I try out doing turns with the alphabet and am surprised when he is able to do it though he misses a few letters!

The rest of the evening goes well and he is an angel while we run errands etc



Because of the tantrum yesterday – I have a detailed written out schedule for him and have asked DH to tick off things as they do them. We meet for lunch and eat at the new organic store which has a little restaurant as well – we have smuggled in McNuggets for R and I am feeling ridiculously self conscious ( as the mother of a fast food eater ) while eating it – R eats amazingly well and I am the one who spills water and sprite

R usually does a major crying marathon- when he says goodbye and its very upsetting for me – but DH has brought along the schedule and I show him that I have to go to the office and show him that I will be back in the evening and that he has a fun afternoon –

Shockingly this leads to a new thing – NO crying and R looks sad but waves goodbye and blows kisses ( in return to my blowing kisses – another new thing )

Could this be the reason for his Separation Anxiety – that every time I say good bye he wonders if it's the last time. My heart breaks at the thought that I have missed this simple solution to his anxiety for so long and I resolve to be more intentional with written schedules

In the evening 20 minutes before E is to come – I show him he has ABA – when E comes he tells me he wants snuggles and I ask E if she minds doing the set up while we snuggle for 2 minutes – This is another good thing and R snuggles with me for 2 minutes and then has a great time in his therapy

It occurs to me that many of the tantrums in our kiddos result from a feeling of not having any control and that giving in to them a little and showing them the schedule gives them a sense of control

DH is busy finishing a book as its overdue in the library and he is very frugal and the thought of a 10 cent daily fine is making him finish this book obsessively ( whereas I am happy to pay a fine as I think of it as a donation to the library LOL )

R has discovered you tube - I know not how – and watches his videos on youtube – I think of Julie and Daniel LOL – I end up turning off the computer as both R and I are too obsessed with the computer

We do the usual Sensory routine and so R gets no computer for 2 hours before bedtime – I want to test the theory that no screen time before bedtime = better sleep – But BOTH r and I toss and turn- finding new cool areas on the sheets - for a couple of hours before we are able to sleep.



DH and R come to the library and I meet them there. I sneak up on R and sit behind him . I love to look at him in these unobserved moments.

He is enraptured by his book and does not notice . It's a book on numbers (No Surprise). I put my arms around him and he jumps. He see me and is so excited that he must stand up and do an impromptu dance. We read many books ( he picks several books on numbers)

I am taken aback by how many there are. Clearly parents of preschoolers are keen to teach them numbers.

I want to look for some books myself – I want murders or cheerful books. It is surprising even cheerful sounding books will have gloomy climates inside them. Last week I borrowed a book that actually had HA HA in his title and it turned out to be a grim satire – full of desperate sounding people checking into rehab ( while simultaneously making it clear that they intended to get back to drugs as soon as they could )

In the library R bursts into tears everytime I disappear out of sight. And then when he sees me he rejoices loudly . While he is going through an entire gamut of emotions he is quite loud .These transgressions go unnoticed however

Owing to the presence of two tantrummy brats that are there. Their mums look mortified. I know they are thinking what we must be thinking – Little do they know that at least one mother in the audience is deeply grateful to them LOL I say a silent prayer of thanks for the belligerent Maggie and the hapless Dan.

I scurry back to R's side when angry Magggie has been dragged out of the library sobbing and yelling "want now" want now"

I go back to the office – Again telling R the schedule is helpful – R loves going to Walmart and so he has something to look forward to as well . I go back to the office while Dh and R go grocery shopping

By the time I get back from office and snuggle with R his speechie is here . R for the second time this week throws a first class tantrum and his session is wasted – His speechie speculates that she had said "All done" meaning she was all done with an activity and R had taken it to mean that they were all done with the session. He had not had enough of a break between running errands and his speech session and so when his hopes were raised and then dashed he cannot take it any more. He simply loves his speechie and loves his sessions with her

I am very distressed at these tantrums. It is not easy to judge when the tantrum is caused by him being overwhelmed and when he is simply being a brat and needs a firm approach. ( I tend to err on the side of compassion though ). His speechie leaves – assuming ( correctly ) that she will get nothing more from him.

DH insists that I spend the evening watching "The Curious case of Benjamin Button" with him instead of doing my routine with R. Its a long movie by Hollywood standards (almost 3 hours) and I really enjoy it. Also breaks are good – as at the end of the movie I have a new hypothesis for the tantrum

In the beginning of the session his speechie had shown me just how she cannot get the G sound any more from him. I wonder if he was hurt by this remark and was carrying this hurt with him.

I resolve to ask her to make a big fuss of him tomorrow

A couple of weeks ago when R had inexplicably burst into tears when me and my friend T( in Orlando ) were talking – T speculated that perhaps R now understands that he cannot talk and all of us talking – excludes him by definition . This is the part that breaks my heart really – not in the way disability affects my life -but in the way it affects his in not so nice ways.

He understands more than it appears and I make a mental note that In our next team meeting we will no longer talk about him in front of him except to praise him!


We all wake up very late ( 9.45 am ) R is slightly warm to the touch. His speechie is to come at 10.30 – so we snuggle for a little bit and then sit on the potty and get ready . I talk to his speechie for a little bit about my theory that he may have been feeling hurt-

I love her – she agrees and says she is going to always make a fuss of him – she jumps around with him on the trampoline and I watch ( its interesting to me how he does not try to play the same games with her as he does with me – Bend Jump , count jump etc ) This is great and shows that R has different equations with different people. His speechie and he have a different set of game.

After jumping they do their Oral Motor exercises. We discuss how his GLOBAL APRAXIA is his main challenge – we are also talking about his ABA program and perhaps his discrete trial needs to change.

He has been having the same activities for a long time !!!And perhaps he is bored

Today is no office and we have a really good time as the weather is perfect – we run errands.

I buy a couple of shorts and a dress . All these clothes are chosen by R– he has incredibly good taste and I eventually I find that the things he picked out suit me better. He insists I buy a purple dress instead of the green one and while purple is not a color I wear usually – I am surprised how nice it looks on me. It reminds me of a day last year – we were at the Van Heusen Store at the Outlet Mall. R was running around ( I thought ) then I saw him earnestly engaged in talking with a woman. She told me that she asked R what to get and she is buying the clothes he pointed at. How sweet people are!

I have been religiously following his visual schedule today carefully ticking off every event as we finish and this is incredibly reassuring and calming for him

He is off to Musical Gymnastics with DH and so I have a few minutes to write

When he is back we will do Piano, Paint, Jump Swing and Swim and the other things in the day



All About the Bailey's said...

Strange, how these last few weeks we also have realized that our son understands more than what we thought....and so we are changing the way we talk in front of him too... You are doing such a wonderful job with him, and the visual schedule seems to be key for him!
Thanks for sharing your week, very interesting.
Will we ever have our play date?
Talk soon!

Rachel said...

First off... I LOVED that he did a dance at the library when he realized you were there.

How incredible to be loved that way, no?

My second thought - he is an incredibly intuitive and intelligent boy. As someone who has dealt with a disability for 30 years, I can tell you that the most frustrating/humiliating and often unintentional thing that people do... is talk about me in front of me.

I have no doubt you are correct. He understands and cognitively recognizes - then emotionally responds to - perhaps a sense that he isn't able to do something.

What a blessing to have a mother who is sensitive to it! My own mother was always good about reminding people to talk TO me, not about me. I am sure you are doing all you can to positively motivate R. I love reading about your days and his progress! Way to go!

danette said...

What a great glimpse into your family's week :). I think it's great how you are always watching for opportunities to learn from R.

Bitty has finally started to be ok with me going to work, instead of freaking out if he sees me leave he just says, "Mama go wuhk" and sometimes responds to my "I love you" with "your da bess fwen a puppy cuh hab" lol. It's made leaving for work every day a lot less stressful for all of us :).

I think it's true that our kids understand a lot more than they sometimes seem to, we have to keep reminding ourselves of that too.

It is nice to read about other working mom / SAHD families :) sometimes dh brings the boys to meet me for lunch too which I really enjoy :). Last week he had a dr's appt which we knew would take a while so I took an extra hour off of work and took the boys to Chuck E. Cheese while he was at the dr. Not fun for dh but it was fun for me and the boys ;).

robin said...

You are very perceptive!

As I type on the computer and my kiddo watches tv next to me, I think we'll both stop and have some quality time.

Loved your week's activity info...

Anonymous said...

I loved this! It's so interesting to read the everyday of other families. I think you are doing a wonderful job with R's visual schedule. I know how hard it is to keep that up. The peaceful days are worth it, though, right? =) Daniel's therapist encouraged me to give Daniel a couple approved choices to pick from whenever possible to give him a greater sense of control. He was having some behavior issues awhile back and that really helped. I know what you mean about R understanding more than he can express or that people might give him credit for. Poor kid! I can't imagine how much I would hate that!! We went through that with Daniel, too. I hope that we're much more aware of what we say in front of him now. I never want to talk in such a way as to make him believe something is wrong with him or say something that will damage his self esteem. It's great to hear that his therapist works so well with him and with you, too! It's so tough when you're not on the same page!

Thanks for sharing all this with us!!

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