Tag Archives: semantic pragmatic disorder

Me.

10 Sep

Me.

Originally uploaded by CleverGirlBek

This is me.

Today, and most days, my burst of energy is around 11am for around 45 minutes. Boyo is usually in school and misses it, he tends to see me at my lowest level of energy (he says “Mama’s energy is blinking red”…Lately everything relates to RockBand it seems…) and he’ll hang out with me in a temporary fort under the blankets and we have this funny little dialog back and forth before the bald guy comes and retrieves him and I hang out, sometimes plugged into the wall so my newest ‘betes gadget can recharge, usually with an earplug in my hand and sometimes crying because I just don’t have the energy these days to get much done and I’m so frustrated and it has moved beyond accepting that I need to adjust my expectations for the day into the endless frustration that getting out of bed in the morning exhausts me so much that I almost don’t make it out the bedroom door.

But I do what I can. I have learned to bring some work to bed with me. I am the queen of containers with little compartments. And I work on working smarter and putting systems into place so I have less to worry about and more time with my little guy.

Kiddo tells me “and then you’ll rest and your energy will be back in the green and you’ll be so happy to play again”…

If only a nap would move my energy I’d be soooooo grateful.

Anyway.
While I was resting today he went to his “office” (his room is set up Montessori style, in little compartments/rooms with 3 foot high walls) and made this for me. I think this is the first thing he has drawn specifically for me. I know this is some sort of a breakthrough, but I can’t get past the tears.

And then I have to explain to him why mama cries when she’s happy…
All of this is so confusing, but he just grabs me a wet wipe and orders me to blow my nose. Which makes me cry harder.

All I know for certain is that I am loved. Really, truly, purely loved.

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Semi-break….

2 Mar

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… :-)

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