Wednesday, April 22, 2015
There are still therapies. Still IEPs (and we've added in regular behavior check-ins for Acorn with the principal and his teacher). There are still people who don't get how much work we put in every day to have Acorn be as close to fitting in as he is (people who think, "he's so close, if you just did more with him, he'd be fine.")....as if fitting in is the be-all end-all of what someone needs to be successful in their lives.
Leaf is moving from her daycare in June, to a school-based preschool (which will be part time this fall, with a few hours in the special ed preschool). Daycare is unable (or unwilling) to move her into their preschool class with kids her own age, because they can't keep track of her there. Frankly, we get a lot of complaints about how she sneaks out of the current room, with 2 adults and 8 kids. And weekly reports that her feeding tube needs to be seen by a doctor (it looks amazing, actually - a little leaking is normal, a little irritation is sometimes expected, so I don't know what their issue is). And they've been asking us to help figure out how to keep her from pulling her hair....because, you know, we're child psychologists, and no one there knows anything about how kids behave.
Leaf is talking too, though much of it is scripted and repeating things she's heard. Still...we get sentences, at appropriate times, with appropriate meanings. After all our work to get her a communication device, she doesn't need it at all, and Acorn is using hers, because the approval for his is still in progress.
Acorn, too, has made huge strides. He says hi and bye to people. He signs, "May I leave please" to be excused from the dinner table. He can, with prompts, go into his closet, pick out a shirt, put it on, pick out and put on clean underwear and pants and socks, and find his shoes and put them on.
Speaking of underwear....Acorn is, finally, by and large, potty trained, and more and more independent about going (instead of needing to be told to go) every day....including going in stores and at therapy and other public bathrooms, which was unthinkable 2 years ago. We recently discovered he had a UTI because he went on the floor, with a horrified look on his face - he hadn't gone on the floor in a couple of months, and was normally not horrified by it, but just sort of "oh well" before.
So...yeah. There's still a lot going on. There's still stuff to work out. Less complicated? Maybe...but mostly just differently complicated.
Wednesday, November 12, 2014
They tell you that sometimes things happen that change your life forever - I'm never sure I believe that really, because every day changes your life forever. You're older, maybe you learned something new, whatever - every day is different, even if they often seem the same.
But his trach was, in many respects, life changing.
He survived. He thrived. I met lots of other people who I would never have otherwise even said hi too on the street - some of them have become close friends over the years. I have become a closer friend to Death than I would have thought possible.
I've learned a lot about people (both in general and in specific). Who sticks around when the shit hits the fan, who slinks out, and who hides under the desk asking if you've finished sanitizing the room yet can be surprising.
Dozens of doctors, nurses, hospital visits, and more...and I still wouldn't say our life is normal.
But I also wouldn't trade it for anything.
Saturday, July 19, 2014
It's just as well - the continuing little issues of having nursing have reached a point of overload, and I need to have my house back, where things don't disappear or get used up without notice.
Leaf has been going to daycare 2 days a week for the last month or so, and enjoys it. They're nervous about her g-tube, but they don't have to use it, so it's all good.
Acorn is in summer school 3 mornings a week, and at daycare the rest of the time, in preparation for Kindergarten, Take 2. He's made so much progress with speaking lately, that I wonder how much he'll need the new communication device we're waiting on - it'll be needed, but he can make himself clear now with some prompting.
And everyone got new bikes this spring - Leaf got an adaptive tricycle, and Acorn got a 2-wheeler with training wheels. Acorn is not so sure about riding his bike out and about, but Leaf is very serious about riding hers. We're hoping to plan some outings with some of Acorn's school friends to encourage him to ride.
So....yeah. There's a lot of re-organizing to do, and re-arranging in Leaf's room, and supplies to be given away, but we are officially a trach free house again! Time for a celebration I think!
Sunday, May 25, 2014
Thursday, May 8, 2014
I realized that Acorn can now hold my hand.
Which is not to say that he didn't hold it before...but that before, he held my hand like a toddler, holding a couple fingers, his hand (and/or wrist) completely envoloped in mine. And now his hand is big enough to actually hold my hand like everyone else holds hands.
This growth thing is subtle. It's a pair of shoes that no longer fit. Pants that were too long that now aren't. Getting to be too hard to carry up the stairs when he's asleep. Words (actual words, and attempted words) coming from his mouth. Writing his name, and walking with me in some cases rather than needing to be shepherded along. Swinging on a big kid swing (and needing 2 people to get him out of a bucket swing....not doing that again!)
Leaf, too, is growing. Tall enough to pull things off the counters. Quick to get on and off furniture. Walking for blocks and blocks - a half mile or more - rather than it being a challenge for her to just get around our block. Riding a tricycle, and cracking jokes (body and potty are two very different signs, but the words sound the same....and making you say one so she can sign the other is hilarious).
Time speeds by, and sometimes I think there are not enough photographs in the world to capture everything I want to capture of them. Photos might capture the smiles, and a video might capture their giggles, but neither can capture the feeling of the world's best hugs, and neither can capture the comparison in my head of tiny preemie hands that couldn't hold the end of my finger and big kid hands that hold my hands back.
Thursday, January 9, 2014
Can I give you some advice though? Sometimes, it seems people get hung up on their perception of what families need, instead of what they actually need. And if you're on the outside looking in (and that includes grandparents), you don't know the whole story, and it's never your story - it's about the child, not about you. It may be challenging for you as a friend or family member, but you'll never grasp the magnitude of how challenging it is for the parents, and the child's needs come before your wants or your comfort.
So let's talk about perceptions.
When you think about your friend or relative who now has a child with special needs, do you think, "oh, their house is always a wreck" or "that mom doesn't dress as nice as she used to or take care of herself the way she used to," or "they don't ever go out and they used to go out every week," or some other critique of how life has changed?
Sure, maybe they're depressed - it's very common in families with complicated kids. But, first and foremost, their priorities have changed. I know in our house, the bee-bee-beep beep beep of the pulse ox is going to come before anything else, even if it means burning dinner.
Don't assume you know what the problem is if you're not talking with them, asking how things are going, and being a part of their life.
Most parents in this situation find that of the many many people who say they will help when asked are never heard from again. Whether they don't know what to do, or are afraid, or embarrased....we never know, we just know that all our good friends no longer are interested in spending time with us. We get that our lives are complicated, that we have less time than we used to, that we often cancel unexpectedly....but that doesn't really seem like the sort of thing that should impact a friendship when we have a good reason for all of that.
Want to help them?
Don't ask what sort of book you should get them, or how to drag them to therapy.
Don't ask other parents what your loved one needs.
Don't think it's about you.
Here's the thing: If you want to help, do something, don't just stand there.
Wash the dishes, clean the toilets, or whatever else you see that needs to be done.
Ask about the medical things you need to learn to babysit. If they have other kids, take them to the park, or swimming, or whatever.
Interact with their child with special needs - sure, you may suck at it in the beginning, but they're still a child.
Bring dinner. Arrange to bring dinner to the hospital, or something that can go in the freezer at home for a day when time to cook goes poof. Call and say you're on your way and ask if you can pick up anything from the grocery store.
Are you seeing a trend here?
Monday, December 16, 2013
The thing is...this sort of experience always make me grieve for others, not so much for us.
We know Leaf will get better in a couple days. We're pretty sure we'll be able to get her trach out in the spring. She walks, she signs, even if she's not talking yet. She's still eating partly by tube, but making progress. Cognitively, she appears to be just fine.
Acorn too, improves each week. He can ride a bike (with training wheels) and write his name. He can do puzzles like a pro, which is new this month. School is going well, with a few bumps, and they believe he's quite smart, that he grasps phonics, that he might be reading some words.
But we have friends who are not blessed this way. Friends whose children will always have trachs and feeding tubes. Friends whose children will never walk or talk. Friends whose children will likely need life long care, for as long as their lives are. Friends whose children face "life limiting" conditions (the polite way of saying that they will die before their parents do). Friends whose children have been through more than twice as many surgeries as my two combined, and who still have many more to go.
It's all about perspective, and it's a complicated way of looking at the world.