Monday, July 28, 2014

Staycation: Day 1

I thought I would get started on the series of posts about how Aidan spent his week off in June between the end of the school year and the start of his Summer camp.  With a child like Aidan, just because he isn't in school doesn't mean the learning stops.  That, along with the therapies, has to continue multiple times per day, all day long.  Aside from just the physical disabilities, in terms of his intellectual disabilities and ASD issues (autism spectrum disorder) he really has limited ability (if any) to entertain himself or focus on an activity on his own.  He pretty much needs to be prompted, guided, focused and refocused a million times per day.  But I have to say, it was still pretty fun, because here's what you don't have during a week home playing with your kid:
--bosses to report to
--colleagues to work with/get along with
--trainees to babysit train
--a teacher and team of 5+ therapists to work with, whose advice you have to follow and report back
--a team of doctors whose advice you have to follow and report back

I must say, this whole "having total control of how I get to spend my son's and my day" is pretty sweet, even when it's hijacked by stomach viruses.  To some I guess the whole idea of being in charge and being on your own with your family is a bit scary, but to me it has been like a life dream ever since the minute Aidan was born and he was immediately transported to a NICU full of a dozen nurses and doctors, where for the next month I had to ask permission to hold, touch, or even see my own child.  In some ways, when you have a special needs child, those restrictions are never quite lifted.  I know some parents, especially new parents, might feel that it's daunting to suddenly be solely responsible for the health, care, teaching and life of another human, especially if chronic medical needs are in the mix.  But I've kind of always felt the opposite.  Like I'm always struggling to wrestle him away from teams of people who are trained to know more, or think they know better, or are just getting in the way.  I always long to say "I know what i'm doing here, everyone back off and just give me some space!" (who, me, a Capricorn?  What gave it away?)

Well, this particular week I had a little time, and we got a little space, and it was very nice.  It's not a trip to Aruba, or even the Jersey Shore, but it was a breather so I'll take it.  

Okay... so... during our Staycation I kept a little journal, so I was just going to for the most part copy and paste what I had already written.  At least that was the plan until just now when I'm reading it back for the first time and... my journal entries appear to be very long and detailed, and I go off on a lot of tangents.  A lot.  Hm.  Well, if you're one of those blog readers who likes a voyeuristic window into the (however mundane) lives of other families, you will like this.  But if you were reading in the hopes of getting bullet-point recommendations for activities to do with special needs kiddos... this may be less fruitful than you had hoped.  

Well, what I can do is slightly outline it for you to let you know ahead of time that Day 1 covers the following topics:
--Vacation Morning Routine
--Summary of my hopes for the week 
--Tangent into Potty Training Strategy
--Summary of the Day, a typical Thursday schedule, including:
*Math Circuits
*Sensory Activity (work related)
*Snack Time
*Cooking Class (!)

So there you are.  I will do a header for each section to make it somewhat easier if you were looking for info on a particular topic....

***Staycation:  Day 1 (Thursday)***

*Morning Reflection Time*

The day begins, per usual, at 3:50 am with my child screaming and rattling the door (it's latched from the outside because of the danger of him getting out unattended- would be disastrous!). Anyway, to help reduce the bed-wetting issues I've started waking him before I go to bed to use the potty.  Naturally, he is dry and also doesn't go in the potty. Yet by morning (er... "morning") he has always wet through everything. His prime time seems to be between 12-3am, the exact time no humans on the East Coast are awake, unless they are shift workers. I recall that the exact reason I never studied to be a nurse is because of the thought of having to be subjected to other people's body fluids.

So we did our usual bath-bed stripping-laundry routine after which I discovered he changed things up a little by peeing also on his pillow. Nice. Halfway through a wash when I hear someone get up to use the shower and I remembered my mother has to be out by 6am buying like a million bagels because this week is her Religious Ed. Summer School which she is in charge of for work. My father is driving her so he's up too. Normally no one is up this early.  Argh, humans.  

Aidan's biting and pinching issues have reached a critical level, sadly. Unfortunately (or fortunately?) it looks like the route they want to take is putting him back on his old seizure meds to see if that modifies his behavior, rather than trying an ADHD medication, and a year of behavior modifications has seen some results, but it's getting to the point where he's constantly endangering the safety of anyone who comes into contact with him, so...yeah. Fun times! But you know me, I'm always up for fun times. Although, I do feel as though I could deal with "fun times" a lot better if I weren't averaging 5 hrs of sleep per night, year after year. Apparently according to various studies, adults are supposed to get 7-9 hrs sleep per night. Er... 7-9? When? How? Is anyone getting that? I mean, anyone with actual children and/or other demands on their schedule? Who are you? Where do you live? Can I come to your house so I can bop you over the head unconscious and steal your identity? Thanks.  Shhesh. 7-9 hours/night. I could run an internet start up and/or win a Nobel Prize and/or start a freaking gluten-free gourmet cupcake bakery enterprise on that kind of beauty sleep. A whole year on that kind of schedule and I might even be... pleasant company. Communicating via more than mere groans and cursing. Hm. One can dream. 
One CAN dream, actually, when one is getting deep, beautiful sleep.

Anyway, back to the present... I tried seeing if I could clip his nails because he was ripping into my arms pretty good. But I couldn't get a hold of him and settle him enough to do the clipping because...he was biting and pinching me and ripping into my arms pretty good. Ah, the vicious cycle. I'm kind of sad that I have all of these great hand-me-down summer clothes for myself, and am really trying to get buff working out, yet the whole Summer I'm just going to have cuts and bruises up and down my arms and legs, and, when we factor in the sleep deprivation also, looking basically like an extra from The Walking Dead. I can get away with long sleeve shirts/collars etc. in an office environment with the air conditioning set to, like, "meat locker" but in average every life I might have to go sleeveless or wear shorts, and I mean running, and swimming at the pool and stuff... hm. It will be interesting. Anyway.

Sadly, Aidan was so aggressive that I needed to relocate myself to the kitchen just to type this. I like to sit by the back door, as I mentioned before, watching the sun come up, with just the screen closed so I can also listen to the birds chirping and the other sounds of nature, which relaxes me. You know, so I can reflect.  After Nana joins us she declares that the entire house (which has been set at the same temperature for the past five days) is "way too hot" and she closes up the doors and turns the air down, even though she's leaving for the day in about ten minutes, whereas I will be in the house all day. Okay. Fine. Goodbye birds and nature. Nice knowing you. Hello forced social interactions.

So there you have it, My Morning Reflection Time.

*Summary of Staycation Plans*
What's in store for Summer Boot Camp this week?!?!?! Well, I do try to have Aidan work on things for his next "grade level" so he'll be prepared for the following year, but I'm afraid I won't be much help to everyone else here, since technically he is going into "Third Grade" in September, but the skills we are working on are more Toddler-Preschool level. 

I can say that we do an Alphabet Letter per week and this week are on the letter J. It happens his favorite nursery rhyme (which we have the nursery rhyme blocks for that I love) is Jack Be Nimble, this may be in part because we do hand motions to go with it and I lift him up to let him jump.... but anyway he loves that. I'm thinking an actual jacks game might be Choking Hazard City so no. :) 


Something with Jellyfish perhaps? We'll see.


What Aidan Ate Today (So Far) 
3:30am to 9:30am 
--glass of iced tea (decaf, half water)
 --bowl of Greek yogurt w/honey and nuts 
--banana 
--dunkin donuts croissant sandwich with bacon egg & cheese 
--tater tot hash brown thingies 
--jelly donut to go for J week (half)
--handful of m&m's at the mall 
--peach tea w/honey 
--bowl of strawberries and blueberries ("snack")

*Potty Training Summary*
We did do potty practice three times already this morning and he went once. But I'm not going to list it each time for our purposes here because... yeah. My basic strategy now is just to keep the diapers at the toilets rather than have changing stations anymore, and practice potty each time he'd normally be changed. His "reward" for peeing on the potty is that he gets to flush, and he gets to wash his hands and play in the water. His "reward" for pooping is he gets to have potato chips, which he normally is not allowed to have just as a snack. 

*Day 1 Schedule*
I mixed things up a little. I had taken him to Dunkin Donuts for second breakfast (eye roll) because he was up so early, and got him his jelly donut. We went to the mall as it opened but before the individual stores are open, so it's pretty empty.   He played at the little kids play garden, so that was sort of a physical activity. Then at home he did "yoga" with me and I got out the Jump ropes :) 
 I recently saw this video on Youtube, "pets interrupting yoga" and it made me laugh hysterically because this is pretty much what it's like doing yoga with Aidan.  Ah, well.  

Just so this whole post isn't a wall of text, here's Aidan at Dunkin Donuts at 7am.



Yeah, just to be forewarned, I had hoped this journaling would also be a sort of photo essay as well, but it seems like a lot of the pictures are just Aidan eating out, so it's basically a dozen pictures of Aidan sitting in a booth, with a different patterned background.  Not even kidding.  

Okay, this is already getting too long, so I'll continue the day in another post, where I will describe in detail:

--Cooking w/Special Needs Kids! A cooking activity, what to make together, what the experience is like, and how to survive it.  

--A Sensory Activity.  Description of plans and goals. 

--Summer Chores, ideas for chores for Special Needs kids.  This kind of segues from the previous activity, because for the most part all chores are also sensory activities for him, or they can be made more motivating by incorporating sensory components.  

Playground Days

The kiddo is home sick today :( I don't have back up because my father is out chauffeuring my grandmom around for her errands today, so I'm hanging out with the little guy.  Actually, sick days with Aidan are sort of a vacation (well, provided he's just under-the-weather sick and not hospital-IV sick....).  When Aidan is sick he sleeps like a normal child at night and takes naps during the day.  He moves at normal human speed, and he eats equal to or less than the amount you'd expect of a picky toddler.  So overall it's just less work and energy expenditure for me.  He's not the miserable, whiny kind of sick kid, he's the quiet, cuddly kind of sick kid.  Seriously, that is the best kind.  

So anyway, let's blog!  Same as with the pool pictures, I was going to hold off until the end of the Summer, but I realized I have more than enough pictures for a post and if I wait too long it's going to get ridiculous.  I think the last time I showed playground pictures we were dressed in pants and jackets, so as you can see it is finally Summer.  Although I must say it hasn't been hot enough for my taste.  Although I prefer "dry heat" as they say in the Southwest, to the humidity we tend to get, overall I enjoy really hot and sunny days.  Especially in July and August and after the Winter of Gloom.  I mean, come on.  But all month it's basically barely hit 90 degrees any day.  Everyone else is loving it of course but... meh.  I mean, who wants to be chilly when you get out of the pool?

  The only up side for me is that it hasn't been too unbearably hot to do a lot of walking around the neighborhood and lots of playground visits.  You know how normally you'll have a month or so of temperate weather in the Spring when it's not too cold or too hot to go for long walks, but then the heat quickly settles in and you feel badly dragging the kids around outside?  (I'm talking about Northeast weather here, of course).  Well, it hasn't really been that hot here.  It's giving me extra opportunities to take Aidan for long walks and try to get him to meet all of his Summer fitness goals.  Yep, that's right, even the smallest member of the family has fitness goals.  Is everyone feeling guiltily lazy now?  Good!

 Oh, first up are some pictures of pond wildlife interspersed with the playground pictures.  I'm too tech-impaired to spend any time putting the pictures in order, so basically let me just say it's a combination of ducks, turtles, etc. from our pond visits, as well as pictures of the Adventures of Mr. and Mrs. Duck in our yard.  Oh, also, these pictures go back as far as May so I apologize if a few might be repeats.  I can't remember if I posted them or not.  





 There has been an explosion in the turtle population at our pond!  Not sure what this means for nature in general, but it has been excellent for photo opportunities.  





To review, Aidan's park goals this Summer have been:
--Walk to and from the park (no stroller)
--choose the activity/playground area on his own
--don't eat the mulch or leaves (sigh...)
--climb up steps on his own (he still needs help going down)
--slide on his own (no help sitting down and pushing off)


 Aidan on the swings.  They do have special swings at his school playground and the adaptable playground, but he can swing on the regular swings if he sits in my lap with my arm around him and I do the swinging.  Hey, maybe that's been the real secret to my abs!  It certainly feels like a workout for me, I can tell you that much.  

 Mr. and Mrs. Duck get more comfortable with the presence of the Slip N' Slide and decide to take an outdoor shower.  

 This is a local school playground which is nice because it is pretty much empty on the weekends.  





 
 


 Oh yeah, one of his other goals is trying to do a pull-up/ chin-up by the end of the Summer!  He likes to hold onto the bar and you can feel him really pulling up.  
 Some of the best aspects of the adapted playground for Aidan, aside from the adapted swings, are the variety of sensory elements they have built in so they are plenty of opportunities for play that don't just involve "climb and slide".  But even there, Aidan's biggest issue is how uncomfortable he is with lots of other kids around or in a noisy place, and the adapted playground can get crowded especially on the weekends.  
Here he seemed really comfortable and when he's comfortable, he does a lot more on his own.  









 These are from the same playground but on a different day, so I had Nana and Poppi available to be photographers as well.