Tag Archives: pre-school

Rolling Rolling Rolling….

5 Aug

You Got To Roll Me….

Originally uploaded by CleverIndie

Keep the dice a rolling

keep the game a moving

don’t ever lose that die!

Rain and wind and weather

hell bent for jenga*

wishing my bro would lose and cry…
*uses a six sided, six color die according to wikipedia.org. Yes. I checked. Would you expect less of me?
We are just getting to the point where playing board games is not eerily reminiscent of my childhood (as an only child, living in the middle of the woods, no cable, and I was the weird kid. I learned to play every game by myself. Even hide and go seek. It’s true. More on that someday. I’m just starting to own that part of me.)…

Alex will sit and play and follow directions (with a great deal of repetition on our part) for a little bit- though his attention is still somewhat short…

All of the games we have happened upon lately seem to have die or dice involved. We have been rockin’ the Monopoly Jr., Clue Jr., and Mouse Trap.

Part of the motor skill challenge has been rolling the die or dice (and actually having it change to a random side). Part of the “I have an almost 6 year old” challenge has been getting him to not pretend to roll it so that he miraculously gets 6 every time, because at almost 6 bigger always seems better even if it gets you sent back to the start of the game board.

We also tend to play around our lovely Noguchi glass coffee table as we can all sit comfortably (and my work is usually overpowering our little kitchen table…Still want my Edison farmhouse table. Someday it will be mind. Someday.) Not only is there glass, there are a few choice knick-knacks near by that are probably not-so-durable and there are two big club chairs and a love seat. My arthritis refuses to get down on the floor to retrieve overzealously thrown dice (actually it’s more of a problem evolving back into an upright position these days).

And I fear glass chips and broken knick-knacks. And face it, my kiddo is wonderful with many things, but his motor skills are a major work in progress.

So here is my solution.

I took a tin with a clear lid (the lid covering is plastic- I do not suggest trying this with a glass-topped tin) that is of the “deep” variety (I got them from SpecialtyBottle.com – the one shown in my image is a 4oz/deep). I popped the die in, closed the lid (the lid isn’t terribly loose but it is not secured outside of friction- so if you feel you need a sturdier hold try some masking or electrical tape around the edges.

And voila! Alex can shake-shake-shake and I no longer have to go fishing for game pieces, the coffee table is intact, and my curios are happy campers and have removed their helmets and safety goggles.

This also helps teach him the rules of “rolling” – he has to give it a few shakes and put it down. This has made a huge difference in his comprehension of rules- those of the game and those little social game play rules. Eventually he’ll roll by himself, but for now this lets us play and show him the joy of playing boardgames as a family. He can focus on playing and not obsessing over this one small part.

The containers are too big to squeeze into most manufacturers game boxes and I like to keep all parts in their respective boxes, so we have one “rolling” container. If he was younger and more apt to try to consume the parts during game play, we would probably secure the lid more permanently.

xo
Bek

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Ode to Boy.

30 May

Alex
Alex

Originally uploaded by CleverIndie

Today we went to the Kindergarten graduation ceremony at Alex’s school. Alex and the rest of the pre-primary kids had prepared a song. I slept a little longer than the boys this morning, and Jeff got Alex dressed. Alex was thrilled to wear a buttondown (his favorite type of shirt) and his rockin’ tie from Toybreaker.Etsy.com.  (Alex has been doing mostly kindergarten work this year, but will be starting his official kindergarten year in August as we all agree he needs the extra time, and the nature of the program allows for this flexibility which is important for a kid like Alex who is uneven as far as development goes.)

We got to school and took our seats…Listened to the squawking of the first group of kids playing the recorder. The next group went up, and gave a little history on Beethoven and his impact on the world and on music, then they started to play…

With those first few familiar notes I looked at Alex and he looked at me and put his head on my arm, and my big boy snuggled so close to me. His eyes were sparkling, starry and happy and overwhelmed and so in the moment. Classmates were play fighting in the back of the room, parents were craning their heads to keep track of their wandering pre-schoolers, and Ode to Joy swelled through the room. And for the first time, it was like this was a moment, a song, an experience, that he was truly connected to. His mind wasn’t elsewhere, he wasn’t talking about buttons on radios, or how a siphon in a toilet works…

He sings Ode to Joy non-stop in his head (and many times aloud) from morning to night and probably even in his dreams. It’s his constant. Ode to Joy calms him and provides comfort through the million and one transitions in his day- some of those transitions are so minor to the casual onlooker, that they would never identify them as such. Everything is a transition in some way, Alex is always very aware of this. Ode to Joy is his security blanket. I know the other kids in his school don’t have their personal theme music playing in their mind 24/7/365, but they don’t need to either. Alex needs that. He identified it himself and started using it as a tool. It seems to quiet the rest of his very active mind so he can function at any level.

On some days it seems like walking, chewing gum, and trying to juggle flaming ginsu knives while translating Lewis Carroll using only a Berlitz guide, into an unfamiliar language (with a different alphabet), while someone barks random numbers and throws sand at you, all at the same time.

To decompress after school and on weekends and holidays, Alex stands in front of his radio and watches the numbers and listens to the 10 different versions of Ode to Joy we loaded onto the ipod for him. Occasionally he pops out of his room to declare something Ode to Joy or plumbing related, but mostly he needs this decompression, the radio supplies the song so the part of his brain that has it on mental repeat during regular daily functioning can rest.

But today, once they started to play the song, he was in the moment.

His brilliant and busy brain and the outside world converged in the space of that room, perched upon a folding plastic chair.

He was at peace for a moment, so connected. So was I. My brain is usually working on how to help him and the things I have to do, there is no down time.

But in that short yet gigantic moment today, both of us were present, for the first time in forever.

And his face and eyes, when they met mine, told me that he was overwhelmed that the world had finally connected with him.

Label Making.

23 Apr

labels

Labels.

Originally uploaded by CleverIndie

Awhile ago, before we really understood what was going on with Alex, I blogged about my label maker…

I really have stopped using it (yeah, not so much disorganized as trying to get rid of the unnecessary things and not commit to keeping them by putting them in a box and labeling them, but not totally committed to….let’s just say my brain is elsewhere… and at this rate I don’t know if I could find it if I needed to)

Before Alex started pre-school he was obsessing over my label maker.
As a reward for doing his best (with anything really) I would let him use my dymo handheld label maker to print one label.

I figured he might type his name, maybe the alphabet A-Z, perhaps some numbers…He took to typing things out in the way one might use a speak & spell…

This image consists of all of the labels he made over the course of a couple of weeks.

Hugs and Kisses

1 Feb

XO

Originally uploaded by CleverIndie

Update: Kiddo seems to be doing a little better…. He seems out of his shell, but operating at a more immature level than we are used to (selective hearing… pretending it’s opposite day ’round the clock…Not answering questions…somewhat hyperactive compared to baseline)… I guess time will tell… Starting a new schedule for him tomorrow that will hopefully help him. Feeling the pressure to bring in info for school but at the same time don’t want to overwhelm his teachers… That and all of a sudden he’s rejecting the idea of bringing his weighted vest(he calls it his huggyvest) to school, so I need to dig deeper on that one and I need to write out a comprehensive (but not overwhelming) sheet on it so it isn’t used inappropriately… Ideally I would like the teachers to suggest that he use it and leave it up to him… It’s not weird looking with his clothes- it actually matches his uniform and doesn’t look weirdly therapeutic… When he got it last summer he didn’t want to wear it to school because he didn’t want the other kids to feel bad that they don’t have one… Hopefully this is still the case… I’ll update the blog this week with a breakdown of his “toolkit”…

Anyway, Happy Superbowl Sunday!

I’m making my famous chili…Some ingredients are so secret that I forget them, so it’s a long process…. I don’t use a recipe. I wing it, build the flavors, tweak the ingredients… It’s an epic meditative cooking experience.. But I recruited kiddo and hubby to remember to stir it every few minutes so I can still rest… Feeling pretty crummy as I’m sweeter than I should be… Nothing is working the same way twice with my diabetes these days, so I’m learning on my feet…Dreading my visit to the endocrinologist this week as I am still mad about the dexcom (he prescribed it even though it’s contraindicated in regards to my other prescriptions, and I want those other prescriptions back!) and last time he told me “Diabetes isn’t hard to control”….Ahhh spoken like a non-d person…. We shall see..

Back to the pretty picture….

The image shows shrinky dink hearts that has/is an occupationally therapeutic project. We are making Valentine cards for school (he loves hearts…hearts and starts are his favorites, but he sees a heart and says “a heart means love” and smile this sweet little smile…)…

So, he used his muscles and hand eye coordination to punch the shrinky dink hearts out using the giant hole puncher. When his arms and hands got tired he worked on his balance and stepped on the hole punch… Thankfully, those silicone baking mats are awesome for projects such as these- a little cushioning and a little non-slip grip…

Then he wrote xo on them which involved planning ahead for spacing…

Then we baked ’em up and he sat in front of the oven giggling like a madman as the hearts curled up and popped like jumping beans before shrinking completely and flattening out….

Next step? I think we have had a request for glitter… I’ll post an update when they are fully sparkly…

Until then….

xo

Bek

Labels.

13 Dec

Staying Dry.

Originally uploaded by CleverGirlBek

Here is Alex…It was raining hard when he came home from school. He wanted to play out on our lanai. I talked him through finding a towel and how he would use it to dry his feet when they got wet on the lanai.

So he put the towel down on the wet lanai and shuffled around outside with his feet tucked into it. He got soaked. The towel? Soaked.

I realize now that I didn’t walk him through and show him: where to put the towel, the precise sequence of events from putting the towel down as a mat, through every detailed movement of his spontaneous play outside, and eventually over to the mat, nice and warm inside the house, to dry his feet.

Because that’s what he needs. Precision. He is intensely rule based and fairly non-flexible.

But he’s wonderful.

But I’m exhausted.

Anyway.

What I want to talk about today is labels.

Alex has a label now. It’s not a precise label, it’s very broad for now, but we now have a label. For us a label is a tool, it is for communication and for research to find the help we need to help him have a happy and healthy life.

So here is my assignment for you. Close your eyes and think what either of the following word means to you. Embrace your interpretation. Then scroll down. (If you would like to, you may anonymously share your initial thoughts in the comments area….don’t worry you will not be judged…I went through this…I’m still going through this….)

Autism.

Ok. Here is the DSM IV (from NIH)/Diagnostic Criteria for Autism and Asperger’s…. Please read them carefully…

Diagnostic Criteria for 299.00 Autistic Disorder

1. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
1. qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
4. lack of social or emotional reciprocity
2. qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor manners (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
3. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.

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Diagnostic Criteria for 299.80 Asperger’s Disorder

1. Qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity
2. Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
3. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
4. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

Looking at the criteria, has your view on what Autism means changed?

I know mine did.

If you are a parent with a kid with PDD of any type- what was your crash course like? What has your experience been with other people understanding even the basics of autism and what it means?
With the amount of Autism news everywhere, I’m amazed that the news outlets virtually never cover the criteria. I get that the human interest story is the child who has the most symptoms and the most impairment, or the greatest non-autism hardship that affects their autism, or their family’s ability to provide for them and their special needs. i really do understand that… But the focus completely on the human interest side, and the lack of an explanation of what autism is, without delving into severity, is doing a great disservice to many children. My dad insists that nobody thinks that autism is really bad parenting and lack of discipline. Then again, he doesn’t read the comments after articles online and he has never been to Target and experienced the full-on Alex fallout because the kid can’t handle the lights and sounds. He has never been there when an old man informs me that “a good beating” would fix Alex because that’s what worked on his kids… And this isn’t just one experience. It is many. Those people are out there. I am grateful that I can express the why to the judgmental butt-inski’s of the world with one word.

And I am reminded (and I have to find the source of the quote) of the mom on a message board that said, to the “well meaning” stranger, “If a kid had cancer would you try to spank it out of him?”

Many people see autism in two ways, there’s the “all autism looks like Rainman. If the kid isn’t acting like Rainman, it’s clearly a discipline problem.” (by the way, you can read about Kim Peek, who was the inspiration for Rainman, on Wikipedia http://en.wikipedia.org/wiki/Kim_Peek)…

And there are the people who see it as purely a discipline problem. (and people like Dennis Leary. I will not get into that at this time.)

And then there are the people who live with it every single second of every single day, be it their own or their child’s or their patients (does not apply to all doctors…we have found that out…We are just learning, yet by reading the basics we seem to know more than some of the physicians)…

So when I use a label to explain something my kid does, please don’t assume or treat us like we are:
1. Trying to restrict our child’s success in life.
Pretending this doesn’t exist is cruel and more restrictive than a true label.

2. Looking for a problem.
We are not looking for a problem. It is there. This didn’t happen overnight. We have known our child for almost 5.5 years. Frankly, we are greater experts in Alex than anyone reading this. We, with the help of family, friends, and a few undereducated professionals, gave the benefit of the doubt too many times. That has delayed helping him in such a dramatic way that has made his treatment more complicated, exhausted all of us, and worse, it has damaged his self-esteem.

3. Restricting him from enjoying life.
We are working hard with Alex so that he may enjoy life, understand it, and not be so scared of things like moderate to loud sounds and the lights at the grocery store. We do not restrict him from anything. Alex requires extra effort from us to keep him safe, due to various issues. This is not us being paranoid. It is us being responsible and keeping our child alive. When he was a preemie, someone with a cold could have infected him and killed him. Now that he is 5, the safety issues are different, but he requires the same vigilance. He falls down and gets hurt (frequently. the child is blessed with my physical grace.), he gets sick from playing with the kid with the snotty river drying on his face at school. We want Alex to have the ability to make good choices for himself in life, so he can experience more and give more to the world. Keeping him alive and giving him the tools he needs to even just have a back and forth conversation are important parts of this. We are not restricting him, we are helping him explore his world. If you need further description, what may appear as restriction to an outsider (anyone who doesn’t live with this every day) is actually comparable to providing a wheelchair bound person with a ramp. We are giving Alex his ramp.

4. Bad parents.
We take this parenting thing very seriously and because of Alex’s needs, we also do work harder at parenting and learning to be better parents, than many folks (not all by any means, and everyone has their *thing*) who have an average or neurotypical kid who just needs the basics (love, food, basic health care, clothing, and a roof over their head). We also have to be teachers, occupational therapists, physical therapists, speech therapists, detectives, physicians, psychologists, behavioral specialists, nutritionists, project managers, and schedule everything with the precision of a railway scheduler/conductor.
So before you judge us to be bad parents, or suggest we “just love him”, know what you are judging and in most cases, know that you have only read the brochure about this land we inhabit, you have never been there or even seen the extensive slide show or even checked Amazon to see if there is a Fodor’s or Lonely Planet guide for our world.

Anyway, enough of my babble. I guess I just want everyone to listen before they judge. (and yes, I have both complete strangers and someone close to me in mind when writing this)…. Learn before you preach.

I also find that the people who lecture on labels and applying them to anyone, are people who have never had anything in their lives that are worthy of a label. Most people who have a label (and to clarify I’m not talking about labels thrown around in name calling and derogatory fashion…I’m talking about labels to describe a fact.) understand how necessary and helpful they are….

Hugs all around…
B

(by the way, in case I didn’t mention it in my lengthy entry, Alex has PDD-an extremely broad label that contains Autism and other disorders….We are 99.9% sure he has Asperger’s… You can check out WrongPlanet.org for more info on Asperger’s…)

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