Friday, July 29, 2016

Assistance devices

Yesterday the bright pink forearm crutches arrived in the mail. A. was here and helped Y. get set-up with them. (I was with another child at another doctor's appointment. It's what I do.) When I got home, Y. was very excited to show them to me and how she could use them. Plus, they could also double as toy guns and as baseball bats. They seemed to her like a really cool toy. J. and I decided that the transition to using them was not going to be as bad as we were anticipating. Sometimes I love it when I'm wrong.

And then this morning came. As everyone was getting themselves ready to leave for VBS, I told Y. that she should remember to grab her new crutches. There was a pause as she stared at me and then said, "Why?"
"Because they are for you to use so you can keep your balance and move faster."
"I don't want to. There are stairs."
"Well, hold them while you go up the stairs and then use them again."

A pouting face and stink eye was then directed towards me. I'll spare you the rest of the downwardly spiraling conversation and leave it at she did ultimately leave with the crutches in hand.

I feel for her. I know she hates anything that sets her apart from everyone else. I can't blame her; who does? Y., we are learning, is fantastically smart and along with that comes a keen awareness of others, her surroundings, and how she fits into it all. She knows other children as a rule don't use crutches and given a choice she would rather fit in than use them.

I wish I could give her that choice. The truth is, though, that without them she will have a harder time just keeping up and not using them will limit her more. Without them she falls... a lot... since her balance is one of the things affected by the CP. She also moves slower than the other children and has complained about this to me on more than one occasion. The crutches, once she learns to use them effectively, will help her increase her speed significantly. They may make her look different, but in the end they will allow her to keep up with everyone.

This is why we had to play the mean parent card this morning and insist she take and use them, even though it wasn't making her happy. Blessings on our church family who all reacted extremely positively to their appearance with positive statement all around. This is going to be a stretch for Y. as she learns to use the tools available to her, even if she is not in love with them. I wish I could wave a wand and erase the need for them.


Thursday, July 28, 2016

Take me out to the ballgame... and the Father of the Year

You may or may not be aware of L.'s current obsession with baseball. (And when L. has an obsession, it is so all-consuming, that everyone in the house is sucked into her obsession vortex.) She wears her Cubs hat, can tell you who the Chicago teams are and if they are doing well or not, and actually looks at the sports section on purpose (a section which around here usually stays in its pristine, just-delivered state.) Her goal this summer was to get to go to an actual real live ballgame.

J. enjoys watching a baseball game, so he was up for taking her. He looked into Cubs tickets and decided that a minor league game might be a better option. This is why he found himself driving 1 1/2 hours last night with five young ones in tow to watch a Kane County Cougers game. L. was more than a little excited, and H., K., G., and Y. all thought that it would fun to go along as well.

That would normally be a 1 1/2 hour drive, if it weren't for having to go during rush hour. From J.'s description, the drive sounded miserable, not because of the children, but because of the traffic. They made it by the middle of the first inning and found their seats. I should really have J. writing this post because then he could regale you with actual stories of how he never really got to watch the game. He did get to stand in line for food and to take people to the restroom, and to stand in line for drinks and to take people to the restroom and stand in line for ice cream and to take people to the restroom. The little people got to watch the game.

L. (who had brought her mitt) and Y. were particularly excited by the foul balls that flew over their heads and were convinced they were going to be able to catch one. Sadly, they never did, but I think the Cracker Jack, peanuts, hot dogs, ice cream, and the actual game made up for it.

When it was time to go, the fun didn't end for J., though. Because they arrived after the start of the game, they had had to park quite a ways away. I can just picture J., carrying a tired Y. on his back who wouldn't have made it otherwise, herding the other tired four children towards the car to head home. Then he got to drive another 1 1/2 hours. At least the traffic was better at that time of night. They hit the house at about 11 pm, where L. pretty much collapsed. I had to carry her upstairs and put her pajamas on her. They were very tired and happy children and J. was a very tired father.

Yet this morning, all five of them were up bright and early in order to head off to another day of Vacation Bible School. I think I may resort to an afternoon of quiet movie watching for them followed by an early bedtime. I hope we all make it till then.

L. is now talking about the next time she goes to a ballgame...
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Wednesday, July 27, 2016

Pick a card, any card

I've threatened to have this made into a t-shirt for D. to save him the energy of saying it repeatedly. This summer, D. has decided to renew his attempt at learning sleight of hand magic. I'm his mother and may be a bit biased, but I have to say, I'm impressed. When he first started out I could usually see what he was doing and how it did a trick. For the past few weeks... ? Well, more than once he has performed a trick and it was both surprising and baffling. At first, I could usually tell what the 'magic' part was going to be. Now, I just don't know half the time. Also at first, even if I didn't see how the trick worked, I could usually figure out how he did it, but there have been a couple of time now that he has completely stumped me. It's been fun to watch the self-teaching process.

It also takes a fairly thick skin, especially when you are practicing for siblings. Siblings, especially siblings who have gotten over the whole do-a-magic-trick-to-me phase, are a tough audience and do not hesitate to point out any mistakes. It has all paid off, though, in that it pushes D. to practice harder. It is rare to see him without a deck of cards in his hands. It is also rare to find a surface in my house without a stray playing card adorning it. I had no idea that magicians were so hard on cards and needed so many. If anyone has spare decks that they don't want lying about their house, I know a boy who could make use of them.

A funny story is that Y. is pretty much D.'s little shadow. She adores him, and anything he does. Consequently, she has gotten him to teach her some magic tricks. It is pretty cute to have her come up to you, hold out the cards, and say, "Pick a card, any card." Of course, she is not as practiced and it is a bit like watching a magic trick in slow motion. I will admit that I have now figured out how D. does some of his tricks by watching Y. perform them. 

I will now attempt to share a very short clip of D. doing a magic trick. If it works, it is only two seconds long, but it is cool watch. If you have the sound up, that's TM playing in the background.

video

Tuesday, July 26, 2016

The wonderful world of orthotics

Y. had an appointment with the people who are going to make her leg braces (AFO's -- ankle-foot orthotics) today. You would think, at least I did, that getting Y. sorted out was going to be fairly straight-forward. I learned long ago that seizure disorders and tissue and bone overgrowth are not so quickly sorted out, but R. and H.'s issues are part of a very rare syndrome. I figured from the outset things would be complicated and time- consuming. Cerebral palsy does not fit in the rare disease category and providers treat and manage it all the time.

Well, it turns out that would be true if Y. were a small child, in whom the CP was recently diagnosed, which is what would happen if she had been born in the US. It seems that seeing a nine year old with moderate CP and making a treatment plan is an anomaly and everyone is a little hesitant to be the one to start anything. It thought it made the most sense to get the AFO's and then starting therapy, since the orthopedic doctor thought the therapy would be useful in helping her figure out her assisted-mobility devices. At the orthotics place, though, they were hesitant to make anything before talking to the therapist because she seems to have two different needs. They did take molds, though, so once the therapist and orthotist talk, we don't have to go back in before the AFO's can be made. So, now I have a call into the pediatric therapy place to get Y. a screening appointment, so that the therapist can talk to the orthotist, so that the AFO's can be made, so that she can use them in therapy.

The other little May Pole I have been dancing around it trying to get forearm crutches ordered. The orthotics place (which was where the orthopedist thought I could get them) doesn't carry them. They did give me the name of another supplier, so I called them. That place has forearm crutches... but not for children. They suggested the orthotics place, which had recommended them. Well, today at the appointment, I was given some names to try online and was able to come home and order some hot pink ones for Y. At the rate we're moving, I'm quite sure these will have arrived before the therapy appointment.

Compared to this, making MRI and EEG appointments is a breeze. I know, because I've done this times two this past week as well. The second half of summer is shaping up to be just one fun-filled event after another. I know you're all jealous.

Monday, July 25, 2016

Ooooo, look!

It's that time of year again... time for homeschool planning for the next school year. I am so excited in a totally nerdy sort of way. I get to make lists and do research and look at books and plan art projects and make schedules. I love this. I think I love it more than actually acting on the lists and schedules and plans. I decided to start this week, since the noisier half of the children are at Vacation Bible School every morning this week and I can get a jump start on the planning. 

In preparation, I headed out to the craft store yesterday to pick up a few things. I should not go to the craft store. I am not one to impulse buy except at just a few places and the craft store is one of them. But look! How could you pass this up? I've never seen anything like it before and I think you should be impressed that I stopped at purchasing just one.


It looks just like a cute little blank box. If this were all it was, then chances are I would have just walked past it. But it is not just a cute little blank box, look at what it does!


You take the lid off and it opens up. Looking at the picture on the packaging, I thought its walls just folded out, but it is even cooler than that because as you can see, it has pages, too. It is totally the coolest things ever!!!

Think of the possibilities for school room activities!!

Well, I had to buy at least one, so wandered around some more to see if I could decide what to do with the first one. One of the things we will be studying is birds, which gave me an idea when I saw these cute little birdies hanging out in another area of the store. I can't wait to put it all together.


I'll show you the finished project once I have it done.


I love homeschooling planning. Do you think anyone would pay me to make custom unit study plans? That would be fun, too. More planning! Probably it wouldn't be cost effective. It's not that I buy particularly expensive items, but by the time you add up supplies and time, it would either be too expensive or I'd be making pennies an hour. Oh well, I'll enjoy my smaller people who will still play with things like this while I can.

Now, off to use the laminator.


Saturday, July 23, 2016

Yahtzee and the ZPD... and a happy H. update

When you do enough reading in early childhood education, child development, and play theory, there are certain names that you start to see over and over again. Lev Vygotsky is one of those names. He is the educational theorist who developed the idea of the Zone of Proximal Development, or ZPD. Essentially what this means is that all of us, and children in particular, have things we can do on our own, things we can do with help, and things we cannot do. The Zone of Proximal Development are the things a person can do with outside help, or mediation. In terms of child development and education, this means that the teacher (or parent or facilitator) is noticing what the child can do with help, and then providing that help until the child can do it on his own. As you can imagine, the ZPD for anyone is constantly moving and changing as the child develop new skills and abilities.

I'm in the middle of a fantastic book about children and executive function (I'll blog about it when I'm done), and there has been a lot of discussion about development and ZPD, so it was fresh in my mind the other day when I agreed to sit down and play Yahtzee with K., Y., H., and L. Boy, talk about a game that is smack dab in the middle of each of those children's ZPD's. Skip counting and by extension multiplying, graph completion, holding multiple numbers in ones head as you write them down, translating English words into numerals, heck, just remembering how to write numerals, are all things this particular crew is working on at the moment and I don't think I could have designed a game that hit so many skills all at the same time. Plus, they are all really enjoying playing it, so it doesn't seem like a school activity to them. It's a win all the way around.

As I thought about it more, though, I have become more and more astounded that H. can play it. And she does, with very little help. If you are new to our family and with H.'s journey in particular, you might find it interesting to go back and read a few posts to catch-up, in order to fully appreciate what I'm going to share.

H. has been home 6 months
Another update on H.
Learning there is comfort
Loving and fixing
One year ago
My science experiment report

I can't quite believe I was writing about the same child then, who is currently sitting behind me doing one of those dot-to-dot puzzles which have hundreds of dots in them. And doing it accurately, I might add. This same child who could not identify numbers or had any idea what a number stood for four years ago, and just two years ago couldn't remember how to write and identify numbers past '6'.

I can't believe that this is the same child who was just telling me all the different ways she can jump on the trampoline, the child who runs without trouble or effort, the child who has complete and total control over her body.

I can't believe that this is the same child who would disassociate at the drop of a hat, the second anything seemed stressful, and by anything I mean everything. She spent a good chunk of her first year here, not really here at all. Now, she is present, does not hesitate to share her current emotional state, tries things that may be hard, is aware of the people around her and what they are doing, and joins in without being prodded. I remember telling J. a few years ago that I will be thrilled if the day ever comes if when at the dinner table H. was aware of the conversation and joined in of her own volition. Well, somewhere along that line that happened and I didn't even notice.

We are particularly struck with how far H. has come since bringing R. home. The contrast is stunning. And it happened so slowly that we weren't even totally aware of the magnitude of change. Even the smallest members of the family have commented on it. It's truly as if H. has jumped ahead by years in every area of development in the past year. She has reached a level of achievement that in my worst moments four years ago, I couldn't even imagine her reaching.

H. also 'gets' R. as no one else does. She is so incredibly helpful and patient with her and has truly become my right hand where R. is concerned. H. watches what things I am working with R. on, and I will come across her later on encouraging her to do the same things.

And the best yet? I am absolutely over-the-moon in love with this daughter of mine, just as with the others. There were also days... years... where I wondered if I would have to fake it for a lifetime. But truly the best gift in all of this is the deep feeling I have for her.

I wanted to encourage R. in making big pictures. I asked H. to sit with us and draw a big picture of her own. Here is what she drew.

These are trees in fall, and on the ground are leaves and a little dog. Completely original and made up from her own mind.

I wish I had more of her early artwork to compare it to. Essentially the early stuff all looked like an early toddler's drawing. This picture makes me so happy.

Realizing that I am missing the 'before', I am going to share some of R.'s work, which she worked on at the same time. As you might have guessed from the rather vague radio silence, life with R. is currently challenging. If I am honest, I would assess much of her current abilities at an 18-month old level. Big change often causes regression in a child, and I'm afraid that for poor R., regression came with a vengeance. We are hopeful (usually) that by meeting her where she is emotionally and cognitively, that we can encourage growth and development.

So for comparison's sake a few years from now, here is her first drawing from the afternoon.


She told me it was a dog. I decided that we needed to back up a step or two (something I find myself doing in just about every area with her these days.) We worked on drawing circles instead.

Here is her first attempt on her own.


So we did some drawing together. After a while, she drew these on her own.


After a while, though, we were back to the non-circles again. If I learned anything from H., it is that the same things need to be repeated over and over until they are firmly lodged in the brain. So that's what we will do. In short spurts... for both our sanity.

Whenever I feel discouraged about R., it does help to spend some time with H. and remember how far she has come. It gives me hope.

And my last little bit of really good news? Well, first go back and read that science experiment post I linked to up above if you haven't already. When I was going through old posts to share here, I saw that one and on a whim decided to see if the gap in H.'s understanding of conservation was still there. We got out the glasses, we poured, we talked, we measured, and then I held my breath and asked the question, "Does this have more?" She pauses, looks at me for a moment with a look that says, "I'm wondering if my mother has lost her mind," and says, "No, it's the same amount of water."

Soli Deo Gloria

Friday, July 22, 2016

But how will I practice my mad kick boxing skills now?

Laundry is a perpetual issue for every family, and the more children you have, the more laundry you have. It's just something that can't be avoided. If I am on top of my game, as as long as I do laundry every day, I can keep it down to just one load a day, only having to do more than that if, a) a child has hoarded their laundry and an entire wardrobe comes down the laundry chute at one time, or b) we (or some portion of us) have been on vacation, or c) there have been particularly messy activities enjoyed. 

Or my life for the last year, your washing machine is breaking and you cannot afford to either get a new one or fix it. (From long experience, the computer brain of new washers is almost, if not more expensive than a new washer.) Our washer, a very generous gift from a friend when out last old washer wore out, has been teetering on the brink of exhaustion for a while and it's particular quirk was that there was a short in the electrical system (we think) and a good swift kick in the upper right hand quadrant would shake everything back in place and the cycle would finish. We limped along together like this for months, the washer stopping mid-cycle, me coming down to move the laundry to discover it had stalled, delivering necessary "encouragement", it continuing and finishing. Then it would decide to cooperate and I would have a week or of normal functioning. 

The past couple of months the teetering increased, so that it was truly only possible to do one load a day because of our little dance. Then finally, on Tuesday, it fell off the edge of functioning and I came close to falling off the edge of sanity. No matter what I did, it would not start or stop or unlock. When I seriously thought about finding a lead pipe to beat the washer into submission I realized we had reached the end, the washer and I, and I stopped from adding a room and victim to the Clue game. 

Instead, I walked upstairs, picked up the phone, and dialed our local appliance store. Pretty much I told the saleswoman, "I need a top-loader (I'm done with front loaders), as big as possible, nothing fancy, it doesn't even have to look nice, and I don't want to pay a lot for it." She found a 4.0 cubic foot washer and I replied I was doing laundry for 12 people. She found a 4.8 cubic foot washer, told me the price, and asked when it could be delivered. I gave her my credit card number.

Today was the day. My new washer is here. It is big and fancy and I'm very excited. Now I can finally catch-up on the laundry. I do not have to have anxiety every time I go down to the basement wondering if the machine has cooperated. Plus, along with my very, very good deal on the washer, I also bought the four-year warranty. That's four years of not worrying about the machine breaking. 

Warranties for large families are a very worthwhile investment, I've discovered. We just use our machines more, thus they reach the end of their lifespans sooner. For instance, on Monday, both of our dishwashers which are still under store warranty are getting fixed and that will be $1000 that I will NOT be paying. Four years seems to be the top end of the life expectancy for a washing machine. I keep saying I would be more than happy to become a durability testing sight for appliances, but so far no one has taken me up on it.

My new washing machine. So shiny. So pretty. So functional.


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