and the kitchen sink, is how I think this post will end up.
Work seems to be calming down – I am winding down in my current position as an Institutional Researcher, and moving back to the faculty ranks as of June 30th. Yes, that means a low-key summer. I am really happy about this decision – while it came about due to a number of majorly stressful and awful work events involving a stolen computer and sensitive data, it’s a good move at this point in my life. Hannah is screaming towards teen-dom at an alarming rate, and being home more when she’s a teenager? As near as I can tell, it’s even more important than when they’re toddlers.
We have added an aquarium and fish to our mengagerie. It started with the gifting of two betta fish, supplied in a teeny tank (divided down the middle so they saw each other but did not fight each other), where they both got progressively more lethargic and seemingly unhappy – as near as I could tell anyway not being any sort of expert about fish states of being. Last week I started looking at Craigslist for a second-hand set up of a tank larger than an ice cream bowl but not seriously huge – nothing panned out by the end of last week so Saturday I went and got a 10-gallon tank from the fish store. Before I could get water in it and the fish transferred over etc., Toby’s fish died…very sad timing and Toby was rather distraught. However it did result in not needing to separate two aggressive fish, and extensive googling on what might fit in there as a community tank with one betta.
The next day, we visited the fish store again and came home with a pleco (which eats algae – it’s the craziest thing, it sucks itself along the glass), a small aquatic Dwarf African frog, and a broad vertical striped platy (a fish about the same size as the betta, which is a smaller female). While it took a day or two for the fish to settle from the stress of transferring to a new habitat, once the heater heated the water and now that a filter has been added filtering the water – all seem pretty zippy and happy. The betta got some new food today – she’s a picky betta (damn). She had been spitting out the little pellets of betta food – but this morning ate about seven freeze-dried mosquito larvae (aka bloodworms, yummy).
I have no pictures yet – the tank doesn’t have a light at the moment, and it’s set in a “well” of a dry sink piece of furniture that we have – leaving it rather dark and unphotographable unless you’d like to see a grey blob of water.
Toby’s emotioanal development has been on my mind lately. It really deserves it’s own post, and I have pieces of the story saved from various emails etc. In short, as he nears the end of third grade, he’s struggling with coming to terms with his own reality and “limits” placed upon him with CP. He apologizes ALL the time for really nothing – often for moments when he needs a little help doing something, often for moments when he perceives someone else’s tiredness or frustration – he takes it on as “his” fault when really 99.9 times out of 100 it has nothing to do with him.
In some ways where he’s at feels so utterly familiar to me – I remember taking on so much as “mine” growing up that really wasn’t mine. I reacted by moving more internally and not expressing some really pretty basic needs (and it was not helped by the reality of all the moves my family made, resulting in new locations, new languages at school, building new friendships while learning new langauges, etc.). Toby does not seem to suffer that same internalization – I am so proud of when he advocates for himself and tells us when something is bothering him (and yes, I tell him so grin).
But the bigger picture is that we’re sussing out finding some help for him. In many ways – it’s a developmental process – third grade is the right timing for him to be struggling through the issues of differences – he’s cognitively aware enough to process his differences in ways that he couldn’t before this point. He started some of this “grieving” earlier this year when the school year started, and even if it’s all developmental – it doesn’t mean he needs to go through it without help and support.
We have also spent the better part of the year trying to get a wheelchair for him. Insurance doesn’t want to pay for it b/c he can walk 20 feet in his walker (or something like that). He CAN walk in his walker (and canes for shorter distances) but he is slow, and if we want to go to a place that has a lot of distance to walk (this local festival like the Lilac Festival; or mall which ok doesn’t happen much but sometimes you just gotta go; or even the grocery store; or etc.) – more often than not we either don’t go, or he sits on the back of his walker and we push him. (Which is so not what the walker is designed for – while we turn it into a defacto wheelchair jeeze he just needs a wheelchair already.) While he’d use it in school for sports and stuff, it’s not really appropriate as a school-funded piece of equipment as he needs it outside of school too. Medicaid won’t cover it because the right wheelchair for him is an atypical choice – it’s lighter than what they’d pick (as an example). We’re on it – we’re waiting for the final “Medicaid denial” piece of paper and then a local agency will cover it. That it has taken SO much effort (including detailed assessments of his functioning in the Medicaid-approved wheelchair vs. the one that suits him better – tracking down a loaner version of that to do so) and that it’s not done yet is just – mind-boggling.
Related to all of that – I have an article ‘published’ up on the Exceptional Parent website – about some of our advocacy efforts in building an atypical slate of services for Toby while he was in EI (Early Intervention, from birth to age 3) and during his early elementary school years. For now, the story is here – their “top story”. Shortly, it’ll be moved to this url (in the “Family and Community” section of their website). I’m pleased to finally have the story out somewhere – it’s a good story and an important one to share with other families working with designing services for their children.
I have been spinning up a storm lately. I need to upload pictures to Flickr to get them here – but I’ve taken the pictures which really is half the battle. Knitting has taken a backseat for the moment – for now, it’s all about adding twist. Or more likely, unwinding my own tension and putting it to good use.
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