Rubik’s Confusion

Rubik’s Confusion

Originally uploaded by CleverGirlBek

Finished the language and speech part of kiddo’s evaluation with the county folks…

Turns out he’s on the upper end of the average range or above it on all things.

Except one.

In receptive language he is severely impaired.

While we had a bunch of work to do before this, now we can focus a little, but I feel like we are snowed in and a little panicked…

Even though this isn’t really news to us. I mean, the term “receptive language” and all of the other language stuff is, well, like a foreign language to me. We knew something was going on, we still don’t know what, but at least we have some validation to our observations which is little comfort, but at the same time, I am forever second guessing myself in a way that I’m going backwards from acceptance and I’m trying to reach for denial with all of my might so maybe I can just curl up with kiddo there and pretend everything is 80’s sitcom normal. But I never get there. And I’m really tired. We could all use the break. But there are no breaks in sight…

So the eval (we haven’t had our formal review yet) was on Thursday and on Friday I came home from a pharmacy run and boy told me a story. Then he told me another one. My little boy stood there and very slowly and meticulously told me something that happened in his day. There was a beginning, a middle, and an end.

He is five.

He told me that he came home and there was a box from amazon.com on the chair. He told me that he looked inside and it was empty. He told me the box didn’t belong on the chair. He told me that he brought the box to the recycling bin. He told me that with Daddy’s help they smashed up the box and put it in the recycling bin.

It was the most gripping account of anything I have ever heard in my entire life.

My little guy doesn’t tell stories. He doesn’t have conversations where he is an active participant in the dance that is a conversation. He blurts stuff. He collects facts. He runs into the room and announces that “The big radio at Target looks like a face” and runs out… He is random yet structured in every part of his life. He does not tell stories. He does not answer questions.

Later that evening I was snuggling with him in the big bed before story time. I asked him about school and the other kids. He has been having a hard time. I asked him why he couldn’t finish his lessons in class today (according to his teacher via my husband).

I expected nothing, except perhaps a change of subject. Lately, his obsession is smoke alarms and fire sprinkler systems, so I was expecting the step by step run down of the sprinkler trigger mechanism.

Instead, he told me- slowly and step by step – that one of the younger kids came over and took his blue colored pencil and broke it so he could not do his lesson.

I was floored.
I asked him if he told the teacher and he said no. So we talked about what to do next time something like that happens. Of course, from what I know of the way his brain works, the solution we discussed can and will only apply to the very same situation, with the very same child, and the very same lesson, and the very same blue pencil. He is very literal and rigid about these things.

But he told me, and we talked about it.

Today everything was back to the usual. The three of us are just so shell shocked with everything in our lives that we were all pinging off the walls and irritating each other.

But that one glimpse of his problem solving with the box, and what happened at school, were the greatest gifts.

Hopefully, when the rhythm of school begins again in the new week, we’ll be able to have more of these talks. I don’t think he is understanding it yet, but I think he is working on memorizing conversational and story patterns…But if that is the case, at least I can get that glimpse into his school day, that may help him more than anything else…

And, faithful reader, if you have read this far, you are probably wondering about the picture…

Hubby was taking a picture of kiddo with his new Rubik’s Cube (he can’t mix up the colors, it will put him over the edge and if he finds out the stickers come off none of us will ever sleep again….) and told him to hold the cube in his hand…

So he is holding the cube in his hand….

Not really type-A at all….But I have to be… For the boy….

Magnet Board…

Originally uploaded by CleverGirlBek

This is our magnet board. I am not a neat freak. I’m nowhere near organized.  I am struggling with this, but it is helping…. *phew*
The magnets were made by me using the Make-a-Schedule software from Do2Learn.com ….
We use the magnet board to lay out boyo’s every task for the day… As he does the various things he gets to put the magnet in a little container (like a piggy bank)… At the end of the day we count them up and they count as points to be used for things on the “menu” of treats…

Right now it is broken down in a fairly detailed fashion but as he masters certain tasks that contain multiple steps they will be truncated to focus on other areas…

The Prize Menu comes from conversations with kiddo, so they really mean something to him…
He loves going to the big car wash (actually, it’s the same size as the other car washes, but that’s what he calls it…) so for 200 points he gets to go to the carwash with us… Or for 200 points we can go out for ice cream on the weekend… 200 points can also be watching a DVD movie with baldguy and me…

The magnet board/scheduling like this is not easy. Right now it and helping boy with the tasks on it are all consuming. I’m exhausted and burnt out but boyo is doing great. This is helping in a huge way with transitions- it’s like he can fight with us and totally lose his marbles, but the pictograms are irrefutable….

We are still working out the kinks… And eventually will have a more variable point system, but starting with the basics works best for us… So here we are…

Oh and the do2learn.com software is wonderful- the desktop version requires a bunch of downloads to get all of the images onto your computer (so you can use the software without a live internet connection- I do most scheduling during boyo’s therapy and they do not have wifi in that building so using it off-line is important to me… If you do order the desktop version make sure you scroll down on the get images menu- there is a “get all” option at the end- you don’t have to be a dolt like me and click them all and wait one by one… Ugh. need more sleep…)

Maybe I should put my sleep on the schedule…. :-)

Update on neuro

Just a quick and brief update…

Looks like pretty bad ADHD (don’t worry anyone, nobody is jumping the gun and medicating the kiddo. With our family medical history we know better) combined with Sensory Integration Disorder and higher language issues, low tone, and poor fine motor skills. Of course, all of these things play off of each other and everything needs attention…

Working on strategies to work on structure and impulse control….

Doc suggested putting boy-o in the public school system where he will be better supported… I agree that he may need a change in school environment/structure in regards to learning with ADHD and not having it be such a mix of “he sat still and learned today” and “he needs to work on his listening/he doesn’t listen” (which seem to be the two brands of report that I get when I pick him up). Maybe that structure is a trial run of more days at school because it seems like the minute he settles down (in his 3 mornings a week) it’s the weekend again…. I understand that public school might be a better fit and better support and it might be more of a no-brainer if we still lived up north. But we don’t. We live in Florida where corporal punishment (physical paddling…rationing of bathroom use…physical restraint) is permitted according to state given teacher rights and those rights offer too much personal interpretation and gray area for me to be comfortable sending my kiddo into that environment without a ton and a half more research and trying out a few more things before we make that big change. I realize not every teacher paddles or believes it is a positive approach to managing behavior in the classroom, but in our county it is allowed….I have lots of what ifs these days…What if a sub comes in for the day and thinks paddling is the only way to deal with a child who can’t sit still or won’t stop talking a mile a minute and can’t stop disrupting his peers? That one person could do a whole lot of damage to my kid, and I’m not willing to take that risk especially before exhausting all other avenues.

Not deciding anything overnight. Not when it comes to my kiddo.

Especially with this. Especially because I have fairly difficult to manage ADD, and I have been through the medical wringer. I ‘m more than a little wary of doctors and other medical professionals making snap judgements based on one little trait…I’m more than a little exhausted from staying on my toes as far as my reasoning goes and being aware that some things can be helped by medicine and need medicine, but not until all other avenues have been exhausted. In our situation that means creating structure at home and in school and working on the kiddo’s other areas that need improvement….

Updates to come… For now I have a whole bunch of organizing of pretty much every part of our lives. Not easy for as our lives have been pretty much an endless series of “survival” modes since I became pregnant with my little guy long ago. Medical and family and financial and work emergencies have kept us moving, but haven’t helped with taming our environment. So that is what we are working on now, so we can have a cleaner canvas to build upon.

Semi-break….

For those of you that don’t know, I am taking a brief break from making custom pieces… My shop is still open, I’m still shipping, but I needed some much needed meditation time… It’s hard. I want to make stuff. I need to make stuff. But I’m pulled elsewhere.  Perhaps all of this time away will refuel my creative tank and I’ll be able to play again… Lots of things are going on in clever-land…  The occupant of much of my brain and heart-space is, of course, my little guy… Tomorrow we head to the new neurologist, as recommended by his occupational therapist, to discuss some of the flags she has seen, and of course, that we have seen.  When she first mentioned the idea of making an appointment she also suggested writing down all of the “quirks” that our guy has.  So for the past month and a half, while waiting for our appointment to come up, I have been looking at my kiddo, and myself, with a magnifying glass that is perhaps too strong.   I spent this past week crying every time he did something that isn’t typical of a regular kid.   I am realizing, with every magnified step that if there was doubt that he is different (and I’m not talking different as in wonderful different- I’m talking about the kind of different where it is hard for him to function in the world just as he is -different)  that doubt has vanished. Part of me dug my heels in today about going to the initial consultation tomorrow.   It’s like folks who dwell in denial- if you don’t go to the doctor than nothing is wrong.  Of course we are going.  Of course going tomorrow doesn’t change anything for the negative.  Going tomorrow is not going to make my little guy different (for lack of a better word). It’s not going to brand him with an affliction.  The only thing that can happen is that we will learn something and be given a giant spotlight instead of the miniature magnifying glass to help us find the tools that can help all of us.   I’m also reminded of when the early intervention folks came for the evaluation almost 3.5 years ago, for his gross motor delays - his pediatrician and neurologist and stay in the hospital and testing had all asked about the things that he didn’t/couldn’t do.  The early intervention social worker asked me “What is he good at?”  and I was floored.  Surely he was good at many things. But we had already been trained to look at the solid negative evidence in front of us and not see the sun breaking free of the clouds.  I’ve kept that lesson- to see the light even when being told to describe only the darkness- because you can, with so many variables have one without the other if you forget to see it all. Anyway, tomorrow we will go and hopefully it will be the beginning of a journey for our family where we will all have the tools to have more good days together.So this is what I’m focusing on… Well, this and reorganizing every bit of anything in our home and my studio so that there will be less distraction for all of us and we can work on having a bit more structure.   My kiddo tends to be pretty black and white about everything and hubby and I tend to be more grey-area, less structured, more artistic….We are trying to find a happy medium…. Hugs all around.  And for the love of pete if someone could tell me why none of my formatting is keeping please please please let me know… :-)