Is the Gate Locked?

check. double-check

We don't ever really relax. We think we do. We get babysitters and go out for drinks with friends. We take turns keeping an eye on Jake, but really there are only five days a year I do not worry about my son: the 'week' he goes to camp. Other than that, my mind, and quite often my body,  is on duty twenty-four hour a day. Part of that responsibility is just what it feels like to be a parent, but I've seen other parents with typical kids, and I see how they can let go of their child's hand in the store, leave the car door or window unlocked, leave the back gate without double-checking the double-lock. They can expect that their child is not going to shimmy through the dog door, and just about disappear in silence.

But there are places that are easier than others. Places where I can let my guard down a little bit, because I either have the safety in numbers of responsible adults, or a well-enclosed space, or just one other person who completely gets my kid, and can recognize things that will be dangerous even if they look safe for another special needs kid.

Our house is one of those places, and thankfully we own our home and can make improvements and adjustments to the walls, and fences without asking any one's permission. Our home is safe, but not without some very serious rules, and a lot of attention to detail. If you come to a closed door or gate in my house...there's a reason, and it's probably not because I don't want you to see me naked. If you make a mistake and leave even one gate or door open, there could be consequences that range from, dirty shoes on the bed (so don't care), to a child covered in dog poop (completely annoying), to a boy who has wandered past the driveway (very worrisome, and I can guarantee that I will cry when we find him), and of course, there's death, because we really can't be sure of Jake's safety awareness, and it's not like he is just going to come back on his own, unless he decides to return through that open gate. Lucy just turned five, but after a pre-teen visitor to the house left the back gate open, I told her that no matter who comes in behind her, even if it is a grown up, it was her responsibility to make sure the gate is locked after any time she passes through it. She gets it, and has done it without complaint, but the amount of responsibility we must place on her is nearly unbearable to me.

Mt. Tallac at sunset.

Tahoe is a safe place for Jake. My sister and her husband, and their children all look out for him, know his abilities, and know when he is not okay by the tone of his vocalizations. The backyard is large and gated and filled with toys and tan bark and a trampoline where the little kids entertain him with their bouncing, twirling and bickering. I know that Jake cannot escape from the backyard, so when Demanda and Jaster clean up the entire place for Jake (thank you thank you thank you), all we need to do is periodic checking for dog poop, which you would do for any bunch of kids playing. With everything taken care of, we can sit on the upper deck, all four children within our view. With nice weather and a frosty beverage this almost looks like relaxing.

And even luckier, I have a few friends who either have Jake-safe homes all the time, or who care about his safety enough to change things while we are there. One family has cleaned up a dirt area and put in palm-sized rocks for Jake to tumble, and ensures that the pool gate is locked at all times, and another has a big front yard that is fenced and filled with dogs and kids who will not let him go out the front gate. We have still more friends who try, in every way, to make their houses a place where we can bring our entire family, by checking gates and keeping the front door closed, even when it's an Open House.

But as much as I really do not want my child to be injured, there is another part of him being safe in our home, in our extended-families' homes, and our friends' homes which may be even more important; it's acceptance. Acceptance cannot be nailed into a wall, or double-locked. Creating an environment of acceptance is not as easy as just sweeping up.

Acceptance is knowing that my son might trample your new grass, or steal the top soil out of your planter, and inviting him to play nearby them anyway. It's not really keeping track of the number of little things he's swiped off your counter, and hidden or broken. And not being too bothered by the copious amount of food that always seem to be at my child's feet. It's inviting a child, my child, with 'toileting issues' to come swimming anyway. It's believing my son has something to say. And it's forgiving me when I can't clean up our debris and dishes because we "have to go RIGHT NOW."

It's inviting us over at all.

And it's inviting us back.

I am thankful.

****

a version of this post was an editor's pick today at OpenSalon.com

Fall Break Week One Update

No California Academy of Sciences today.. my great plan to entertain both of my children. Today is "Free Wednesday", and while I think that is just fantastic for everyone else, those kind of crowds do not make navigation easy, so we will skip that.

Jake is feeling a little bit better in terms of episode...I think... He was able to lunch yesterday at a restaurant. Sage met us at the local Indian buffet and he was well behaved and was even following some directions. Jake and I "rolled" around the shopping area from 10:30-2pm waiting for our car to get new run flat tires, then new front and rear brakes... ouch to the wallet. Run fat tires are a great idea, but they cost at least twice as much as most tires and last half as long.

Anywhoo, Jake went into his wheelchair happily... he has a cold so he was a bit lethargic, which after the past however many weeks of spazzing and throwing, I'll admit I was a little bit okay seeing. We went to a discount store where he picked out his costume.. a skeleton. He laughed when I told him it was perfect because he was skin and bones already.

I don't think Lucy is going to be thrilled with Jake's choice of costume. She is prety convinced that she is going to be a penguin, Jake is going to be a puppy, Daddy is going to be a pumpkin and I am going to be a bee. Just ask her. SHe's been saying this for at least a month now. How quirky she is!

Wish us luck we are off to Lucy's swimming lesson. Jake hates it there... lovely.

*************************

Swimming update... Jake did very well at the enclosed noisy swim school that Lucy loves so much. Half way through the lesson my dear Squid came to entertain Jake so I could help the teacher Faith, remind Lucy to use "big arms". Jake even gave Squid a little low five in the car and smiled when she asked whether he was going to come over to her house soon. Yay for friends! Yay for Jake feeling better! Yay for giant coloring book purchased for Lucy at Costco which may keep her entertained for the next 15 minutes!

Yay for Swimming!

post swimming lesson this morning:

Momma: "Lucy, do you like swimming?."

Lucy: "No."

my face clouds with despair

Lucy: "I WUV swimming!"


Hooray! Hooray!

Misunderstandings and Missed Opportunities

I am trying very hard to do a couple of things...

• provide Lucy opportunities that are not simply "tag along to what my special-needs brother can do"
• do things with both of my children at the same time outside of the house.
• actually ask Jake what he wants to do by giving him choices, instead of guessing (mostly correctly) and deciding for him.

Today I had a lovely breakfast with Bridquet and her daughter at one of my favorite cafes.. Lucy's trial run at daycare was cancelled (making me feel so relieved it nearly makes me want to never work again). I got to Trader Joe's buying the much needed 2 Buck Chuck requested by my sister Demanda... I fed Lucy lunch. I picked up Jake from the bus with plenty of time to spare.. I accomplished a lot.. or what I lacked in volume I made up for with success. Small victories are good.

We were invited to go swimming at Squid's house.. lucky us, and I had all sorts of grand plans to take Jake and Lucy and Jake's aide Valerie and head to Squid's house, but in keeping with my above stated efforts, I took a "Yes" "No" card we have taped to the fridge and actually asked

Jake: "Do you want to go swimming?"
He hits the "No" side of the card, but it looks like he may be hitting something (a drum?) next to it, so I remove the object and ask again.

He looks at "No".
I ask him again with the card in front of my face. It is see-through so I can see where his eye gaze heads..."No".

So I ask the same if he still wants to go to Ms. Squid's house and play on the trampoline or something else "No". and a little bit of a verbal "nah".

Then, to double check, I ask "Do you want to stay home?"

I get the eye gaze and a tap on the card in the "yes" corner.

So I talk to him about how that is totally fine, I understand because he is tired etc.

and I pack up Lucy and we say goodbye and we go for a fun swimming session with Squid and her three guppies and another friend and her guppy joins (can every one's kid swim but mine? working on it....)

When we get home I discover that the moment we shut the door behind us, Jake ran to the door, threw himself on the ground and whined/yelled. Valerie explained to him that he had said he didn't want to go and that we would be back..

Apparently he sulked for quite awhile.

Did he think I wasn't going to go if he didn't want to?

When I asked him that question, as I hugged him on the couch when we got home...
he looked me right in the eye, then buried his head into the couch.

What goes on in his head?

As Sage says "Hard to tell jennyalice. It's hard to tell." www.canisitwithyou.blogspot.com

Lucy Loves Waterfalls

Lest anyone think that our Maui trip was not also amazing and fun... the cascading pools at the Grand Wailea are really a lot of fun with waterfallsand water slides and a lazy river and a rope swing and lots of other crazy pre-teen party fun.





wailea

Same. Same

 

Just like the Grand Wailea..'zactly like it.