Tuesday, April 29, 2014

How to Make a Medicine Spreadsheet Chart on Excel



OK, I admit it. I have trouble remembering to give Malachi his medicine. Even when I do, later I don't remember whether or not I actually did give it to him. Part of this has to do with the fact that his medicines are in liquid form so those cool pill cases don't work for us. Add to the mix a few more caregivers and things get pretty confusing.

So, I created this handy chart and taped it to the back of the medicine cabinet. We are still not at 100 percent compliance, as pharmacists say, but we're getting better! Soon I might actually get ambitious enough to add other medicines and supplements. Woo-hoo!

Here's what you do to make one of your own in about 5 minutes:

1. Open Microsoft Excel. (I actually use Open Office, a free, open-source version of the Microsoft Office suite.)

2. New spreadsheet document.

3. Title in bold at the top.

4. Skip a few lines and start a heading row containing "Date," then each of the medicines. Include their dosage or time of day if that's helpful.

5. In the first column, under "Date," write today's date or whenever you want to start. Then — this is the cool part — click on that cell to highlight it. In the bottom right of the cell, you'll see a black dot. Drag that black dot down the column — about 48 rows for an 8.5 x 11 -inch print out. If your software recognized your input in the first cell as a date, it should copy that pattern to the rest of the cells and complete your timeline.

6. Print and post near your medicine. Check off when you administer the dose. You might even begin to see patterns emerge about when certain behaviors pop up or don't depending on if you forgot!

Enjoy and let me know if it's helpful!







Grab button for Special Needs Tip Tuesday!
<div class="Outrageous Fortune-button" style="width: 150px; margin: 0 auto;"> <a href="http://www.outrageousfortune.net/search/label/tip%20tuesday" rel="nofollow"> <img src="https://lh3.googleusercontent.com/-pfDLc6CZMNI/U0N90smYK8I/AAAAAAAAC3M/-rGNPvh4MDo/s250-no/Tip+Tuesday.jpg" alt="Special Needs Tip Tuesday!" width="150" height="150" /> </a> </div>


Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Monday, April 28, 2014

Adventures in Hippotherapy

You might think hippotherapy is some bizarre form of exercise with highly dangerous two-ton water cows. You would be wrong.

Even though it is not called equitherapy, it has to do with horses. Some kind of Latin thing. If only the Romans were around to explain.

Nonetheless.

Behold! Malachi having the time of his life on said horse! He absolutely loved it!




…Until the third week when I got the crazy notion that I could leave him with the therapist for 10 seconds while I wandered over to my seat on the sidelines. Then he totally freaked out. To this day I have no idea why. Did he suddenly realize how tall the horse was? Did the therapist inadvertently do something wrong?

Perhaps he could just tell that I was headed on the next plane to Caracas to leave all this behind and live out my days on a sun-bleached plantation as a salsa baroness. Or lime queen. Potato contessa? Where is Caracas again?

Anyway, for whatever reason, he totally freaked and wanted absolutely nothing to do with riding horses. Petting them, reading their name tags off stalls and harnesses, feeding them carrots and giggling at how slobbery they got, sure. Who doesn't like a good slobber? But riding them? What kind of demented mind came up with that?

It took us four weekly visits — during which we mostly just did assisted yoga and some occupational therapy stuff — to get him back to his happy place. By then the term was over. This, by the way, was a term that it took us eight months of poor communication and bad luck to get signed up for.

So. That was that until such time that we decide to try it again.

Which I think we will. Because. You know. I'm crazy.


Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Saturday, April 26, 2014

Floor Time Frustration

Something I've really incorporated during the past year is how important it is to stay positive. As in, it actually improves outcomes to focus on what is going right and ignore what isn't.

That said, it's time for a rant.

A year after we first discovered the Anat Baniel Method, we went pretty hardcore into it. During the past two years, we've spent tens of thousands of dollars on lessons with senior practitioners, including Anat Baniel herself.

A key point of ABM is to leave the child on his back on the floor as much as possible. Anat Baniel believes that special needs children, when given the proper information and treatments, will progress on more or less the same path as a neurotypical baby, just slower. For the same reasons physical therapists across the nation discourage the use of Johnny Jump-Ups and other standing devices for neurotypical babies, Anat argues that most equipment, such as walkers, standers and the like, only serve to in-grain bad habits and teach the child ways of moving that won't lead towards independent and pain-free movement.

This has never quite felt right to me, but Anat is right about so much else that we decided to give it a try. For at least a year — during Malachi's most critical period of brain development — we gave him as much floor time as he would tolerate and had him in supported sitting the rest of the time. A year ago, we relaxed this policy to try out a gait trainer, but rarely used it until Malachi suddenly learned how in September.

Throughout the past two years, we've had the exact same pattern with floor time repeated over and over again. Malachi will roll over one day, and I think joyfully: "This is it! He is finally putting it together! Pretty soon, he'll be rolling all over the house!" But he doesn't really do it again for months. Then Malachi will learn how to crawl, and I think joyfully: "This is it! He is finally putting it together! Pretty soon he'll be crawling all over the house!" But then he doesn't really do it again for months.

I keep waiting for him to feel internally motivated to use these skills, to get that object, to explore the house on his own, but no matter how much I wish and wait and leave him alone to surprise me, IT NEVER HAPPENS.

Check this out. Here is a post I made before our second trip to the Anat Baniel Method Center containing this video.




Here is a video I made today. I tried to get one as similar as possible — because honestly he looks exactly the same today as he did back then — but I'll post this one because it's pretty indicative. He wants and needs my help to roll over, no matter how often I try to encourage him to do it himself, or leave him to figure it out himself, or add variations to his playing surface with bolsters, or be quietly enthusiastic, or hang out with him on the floor, or find fun toys or games to play on the floor, or any of the other things I've been told to do.



Floor time at 3.5 years old from Shasta Kearns Moore on Vimeo.

Meanwhile, it feels like all of our friends' kids who are doing ABM are taking off, like this one and this one and this one and this one.

WHAT THE F AM I DOING WRONG?????????

I mean, yeah. Malachi has been improving a lot in the past two years. He is very smart. He talks very well. He can (assisted) kneel. He can (assisted) pull to stand. He can sit unassisted for short periods of time.

But the kid is nearly four years old and 99 percent of the time he needs or wants to be anywhere other than where he is, it is somebody else doing the moving for him.

I feel like, if anything, our imposed floor time rule has taught him that the floor is where he feels frustrated and powerless.

I know we are blessed in many ways and that there are plenty of other children doing ABM who have less function than Malachi does now. The grass is always greener on the other side.

But seriously? What does it take to get this guy to move by himself?



Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 



Friday, April 25, 2014

Using VitalStim to Counter Dysphagia in Kids with CP

When Malachi was first born and in the NICU, he ate more readily and gained weight faster than his identical twin. For several months, he was the larger of the two.

It was not to last. He began to develop a strange behavior during breastfeeding. He would suck for a while and then it was if something sharp poked him in the mouth. He would rear back and cry, or simply stop sucking and do that silent scream that babies do when they are so upset they can't breathe. For months I worked with lactation specialists to figure out what was going on but nobody had any useful ideas.

Finally, just two days after their first birthday, we did a swallow study, which is a nice term for feeding a very hungry baby barium while strapped inside an X-ray machine. The test results showed that his swallowing muscles weren't working together with the customary split-second timing. Thin liquids zip down his throat too quickly for his swallow to keep up. Have you ever had a "bad swallow" where something shoots down the wrong tube? This was happening to him pretty much every mealtime.

The only solution for him, I was told, was to add thickener to his liquids until they are the consistency of honey to avoid it dripping into his airway and risking aspiration pneumonia.

If we didn't thicken every cup of water, juice, milk, whatever — the feeding specialist tried to impress upon us — Malachi could die.

P.S.: This is a condition that gets worse with time.

Awesome.

So, we started going to a different hospital feeding clinic where they were a little less reactionary but still wanted us to add thickener to his bottles. Eighteen months later, the developmental pediatrician told us that back at the other hospital they had this device that had been shown to improve dysphagia. Funny. I wonder why they didn't mention that when we were there. Maybe it's new?

(Nope! Speech Therapist Steve Gorsek has been using it for about a decade.)

It's called VitalStim and it is an electronic stimulator, similar to what is used in many physical therapy clinics for injury rehab. In this case, the therapist attaches two small conductive stickers to the patient's neck and turns on the machine to electrically contract the muscles according to a set pattern. The goal is to strengthen these muscles and teach them how to work better together. Treatments are about 30 minutes, during which the patient should be eating.

So, we gave it a try last summer for a recommended course of once a week for 10 weeks. We did see marginal improvements — he was eating his bottles faster and with less gurgling sounds afterwards. However, we still had to thicken his liquids and he still wasn't eating much regular food. His weight continued to gain poorly.

A little more than a month ago, we started a course of VitalStim again. We are still seeing improvements and this time they seem a little more substantial.
  • During the treatment, he can drink an entire bottle of PediaSure with no thickener very quickly. 
  • Since the swallow study nearly three years ago, we have been able to gradually reduce the amount of thickener we use from three tablespoons to one or one and a half. (Less than that and we still hear the gurgling sounds in his throat.) 
  • He seems to be drooling much less.
  • His therapist says he likes how he "looks" eating, as in how he is chewing and swallowing. I'm sure Steve has fancier language for that, but that's all I've been able to follow.
  • His weight gain has also improved significantly since January, but I largely credit Pediakid Appetite and Weight Gain Stimulant for that.
  • Malachi has never had any unusual respiratory illnesses nor aspiration pneumonia, (knock on wood).
As for Malachi, he really hates having the stickers put on his neck and gets anxious about it beforehand, but once they are on and doing their thing, he is a happy camper. He watches Blue's Clues, drinks a bottle and is hand-fed Goldfish crackers like a Roman emperor. 




Like most things we do, it seems to be helping, but what exactly and how much remain a mystery.



Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Thursday, April 24, 2014

Reaping the Rewards

Remember my post about the Risks and Rewards of Being a Medical Research Subject? Well, one of the rewards I forgot to mention is that they tend to give you money. For example, during last week's testing they gave us $20. I feel weird about keeping it, since Malachi's the one who does all the work, so I give it to him to spend how he wishes.

Yesterday we had to pick up a prescription and as I'm getting him out of the car he says in his slow, careful way: "I have an idea. How about we go to the toy section of the Fred Meyer Pharmacy?"

"What do you want to do in the toy section?" I ask.

"Umm…. just look around."

Well. Guess what he bought with his wages?




Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Wednesday, April 23, 2014

Twinhood Scrambled

Today JJ is off on an adventure with his aunt, and I have been ruminating on twinhood and disability.

I do this from time to time. Perhaps it's because I had only two months between when I found out my pregnancy was twins and when they arrived. It already seemed so hard to have twins. Then they came early and that seemed so hard. And then one had a brain bleed and that exploded my mind… no pun intended.

So I play this stupid game with myself sometimes of wondering what it would be like if they weren't twins.



What if I had just had Jaden, how would life be now? Would he still be so intense and quick to anger? Would I? How different would I be as a parent? How different would he be as a child? In what ways would things be easier/better? In what ways would they be more difficult?

What if I had just had Malachi? How much more function would he have if I had more time and focus to implement therapies and strategies? How much farther could he go if he didn't know he was so far behind that it wasn't worth trying? Or, would he have less function because he didn't have a typical twin to push him? How much do I — as a parent who has never been around children in adulthood — benefit from having a neurotypical example to show me what is developmentally appropriate?

There's no point to this debate, which is why it goes round and round in my head.

But a few weeks ago, I went to a fantastic talk from Kathie Snow, author of Disability is Natural. If I can be allowed to paraphrase, the crux of her lecture was this:

When we think about what truly matters in our life, do any of us say: "Gosh, I'm glad I have a pincher grasp."? Or: "Man, I love having a smooth gait."?
No. We don't. Because what truly matters in our lives and in every person's life are PEOPLE and EXPERIENCES. Having loving relationships and being able to participate in a wide range of what life has to offer is all that anybody wants. Both of those things are possible no matter what a person's level of function and those should always be the goal.

In many ways, this finally put to rest the twinhood debate in my head. Of course Malachi is better off for having his brother, no matter what his level of function. Of course Jaden is a better person, even if he doesn't get enough attention.

And yes, I am a better parent for having both. Because if I were the parent of a singleton, I wouldn't know what I couldn't know: that there are very few "right" ways to have a family and a whole lot of different.



Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 





Tuesday, April 22, 2014

Chia Seeds: A Simple and Fun Way to Make Your Kids WANT to Boost Their Fiber and Nutrition!

OK, this is a silly little post, but I'm quite proud of this idea, so I needed to share it.




I put Chia Seeds, which are super nutritious and high in fiber, into a pepper shaker.

Pay attention now because this is the key: I then called them "sprinkles."

Since my twins' first introduction to "sprinkles" was during Christmas cookie season, they were predictably elated about having sprinkles on whatever they want — oatmeal, applesauce, whatever. They even get to shake them themselves and who cares if they put on way too many?

It's been several months now and they still are excited about sprinkles and only occasionally seem to wonder why they don't taste like anything.

Try it with your kids. Major mom points.

(Oh, but make sure you don't give them access to any pepper shakers with actual pepper in them. I have a feeling this would very rapidly end the "sprinkles" honeymoon.)







Grab button for Special Needs Tip Tuesday!
<div class="Outrageous Fortune-button" style="width: 150px; margin: 0 auto;"> <a href="http://www.outrageousfortune.net/search/label/tip%20tuesday" rel="nofollow"> <img src="https://lh3.googleusercontent.com/-pfDLc6CZMNI/U0N90smYK8I/AAAAAAAAC3M/-rGNPvh4MDo/s250-no/Tip+Tuesday.jpg" alt="Special Needs Tip Tuesday!" width="150" height="150" /> </a> </div>

Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Monday, April 21, 2014

The Risks and Rewards of Being a Medical Research Subject



Do you see how much Malachi is enjoying himself here?? This was a total shock to me!

This is during our second visit in the OnTrack study, a Canadian effort to track the progress of children with cerebral palsy. The idea is to be able to give medical professionals (and thus parents) a clearer picture of what a child with cerebral palsy can be expected to be able to do as they grow up.

Although I am wary of children being pigeonholed, I for one would welcome this sort of information. By far, the hardest part of this journey for me hasn't been accepting Malachi's disability, it's been not knowing what in the heck his disability is and whether or not he is progressing faster or slower than one would expect.

As I've mentioned before, there is a gross lack of medical research on cerebral palsy, even though it is the most common motor disorder in children. For a very long time — and even continuing today — doctors would look at the brain scan of a baby with brain damage and compare it to that of an adult with similar damage. Then they would often say something awesome like: "This child will never walk or talk."

Over and over again, they were proven wrong.

Nowadays, at the best hospitals across the nation, doctors look at the brain scan of a baby with brain damage and say: "This child will have cerebral palsy, which may severely affect his function in any number of ways... or be barely noticeable. We have no idea."

Very. Frustrating.

So when I heard about the OnTrack study, I signed Malachi up, though not without some reservations. You see, medical studies are sort of like vaccines. It would be really great if everyone else did them so that we didn't have to incur the risks!

Even though I can see during the process how researchers are trying to be respectful of the children, testing is brutal. The very nature of testing is to zero in on the problem. If you are testing inanimate objects — car battery, plywood, etc. — to discover their breaking point, this is perfectly reasonable. But when the subject is a thinking and feeling human being, it's a lot more complicated. In testing, the subject does a difficult activity until she fails. Not a very fun or uplifting thing to do, and certainly not something that makes anyone, let alone a kid, want to try very hard at it.

In Malachi's case, in particular, he has an extremely hard time with failure. The first time we did the OnTrack study six months ago, he got through about three of the tests before he threw in the towel. The researcher kept trying her best, but he just did not want to cooperate.

So it was with a certain measure of dread that we agreed to the next round of testing. Imagine my surprise, when this happened:



The dude was stoked. He kept reading (yes, he can read) the questions off her paper, relishing in the opportunity to try out the next game.

Of course, a big part of this might be that he was doing AWESOME! He sat unsupported on a bench for 30 seconds, which I didn't know he could do. He also showed off how he could catch himself with his hands sometimes and hold his head steady through various positions, which I know he wasn't doing last time. I was so proud of him!

So even though testing can be trying, I am glad we are participating in OnTrack. Progress can seem excruciatingly slow here at ground level, day in and day out, but having this semiannual check up helps me feel that we are… wait for it… on track!



Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 



Sunday, April 20, 2014

Happy Easter!

Moms don't get holidays off — in fact, as this awesome video points out — they work harder!





Fortunately for me, bloggers do get holidays off, because I say so. I don't even have cute Easter pictures this year. Unless you count this one…



So if you need something to read, feel free to pick through my Easter archive! Good night!

Saturday, April 19, 2014

How Our Twin Three-Year-Olds Learned to Read

Malachi at 38 months adjusted age.
Right before this picture was shot, he asked me:
"Mama, what is 'pee-saw-rus'?" trying to read "Phosphorus" off this element block. 


Here's a typical day in my life:

We wake up in the morning and eat breakfast. Malachi reads the front of the food packages: "They're 'made with real honey,'" he says of the Honey Grahams. "It has '2 grams of protein,'" remarks Jaden, reading the Nutrition Facts off another package.

Then we go to preschool. Malachi discerns that today is his seatmate's birthday because she is wearing a shirt that says "Birthday Girl." Then, he glances at the wall and starts to get upset because he's pretty sure it's April but the calendar still says March. We fix the calendar and move on to painting. All the other kids pick "purple" or "blue." Malachi reads the top of all the canisters before selecting "Wine Grape" over "Sky Blue."

After preschool, it's time to go to the library. Jaden points out all the "Exit" signs, reads the time on an analog clock and enters my phone number into the check-out computer. Malachi and I pick out a fairly long ABC book by Rosemary Wells and settle down for the Read to the Dog program. By the letter C, I wait for him to read the letter before I read the rest. By the letter M, I wait for him to read the bolded words in the alphabet story. From the letter T on through the rest of the book, he READS THE ENTIRE THING ALL BY HIMSELF. Even complicated, multi-syllable words. (The dog was not all that impressed, but I sure was.)

It's even getting to the point that I have to shield my text messages from them or they will read them!

Need I remind you all that these boys are 3 1/2-year-old preemies, one of whom had significant brain damage?

Jaden is a remarkable 3-year-old reader by anyone's standards. Unfortunately for him, he often gets judged by his brother's standard which is off-the-charts. I haven't formally tested either of them, but I would guess that Malachi can probably read at a second-grade level. Seriously.

So how? How come my kids read so well?

First and foremost, I believe this household's attitude about reading is what has led to their success.

No. 1: They LOVE to read, especially Malachi. Reading is Malachi's second-biggest joy in life (the first being his love of numbers, which will have to wait for another post). If screen time is off-limits, his next choice will almost always be a book. This love of reading is something I don't think I or any of their other caregivers can take credit for. At this point, we couldn't stop them from reading if we tried.

No. 2: Malachi in particular pays a lot of attention to words. When confronted with text — say a new street sign or a poster on the wall, Malachi will stare at it for as long as it takes to figure it out. This is something deeply important to him and probably largely due to his cerebral palsy. He is often stationary when other 3-year-olds are in constant motion. He has also received an enormous amount of brain-body work through the Anat Baniel Method. (In fact, I'm pretty sure that all our efforts to teach him physical movement are going into academic prowess! Oh well, maybe he'll be able to repay us for these costly lessons after he graduates MIT — ha!)

No. 3: Psychologically Malachi and Jaden take a lot of pride in being able to read. They feel confident and powerful about reading. They know they are impressing adults when they read. For Jaden, too, he wants to be able to do what his brother does and so pays much more attention to reading than I think he would without Malachi. Psychology is an important component to learning that I think is often over-looked in test-based school environments.

No. 4: When they read, it is usually silly. We laugh many times a day about written words, either their content or their funny font style. For example, the last couple days, we've had an inside joke. Malachi will say: "This is how you Sonic," in a funny voice because one time he read a graphic slogan off the side of a Sonic restaurant cup and thought it was hilarious. That joy — that spike of dopamine — cements in those neural pathways. This is what I try to tell our conventional therapists all the time — when done right, learning is FUN, it's not hard work. It is also what might be considered "WRONG"! When Malachi says: "ThisishowyouSoonnnk," it is barely understandable. He thinks it's funny to say it all wonky and is laughing so hard that it comes out even wonkier. That's OK! I don't make him say all the words out correctly, because he's having fun and that's what matters most.

OK, now I will let you in on some of my secret teaching tools. Without the above psychological and emotional components, these would be pretty much worthless, so remember that it's not about this or that trick!

Jaden's first word was "cat." Malachi's first word was "mama" ….and his second word was "cat." So anyway, cats featured prominently in our early conversations. When I discovered that they could recognize all different colors and sizes of cats, cartoon cats, pictures of cats, etc., etc., as all belonging to the "cat" category, I figured that they could recognize letters because they are a much simpler and less variable shape. By the time they were two years old, they knew most of the alphabet and numbers up to 10. This was not something I drilled into them; I would just point out letters and numbers throughout the day just like I would point out trucks and dogs and airplanes. (They still love telling me what aisle we are on in the grocery store.)

From there, Malachi and Jaden's grandmother really took the reins. She read to them a lot and bought cool flashcards and exciting books. Their favorite books were:

  • The Fun with Phonics series by Sue Graves, including Jen the Hen, Bug in a Rug, and Fat Cat. These books all have a wheel to turn showing how changing the first letter of a word makes a rhyme, such as fat, cat, rat, mat, etc.
  • The 24-book series My First Steps to Reading by Jane Belk Moncure. Each book in this series personifies a letter as a little kid who then goes around putting things with his or her letter into a box.
  • The BOB Books boxed sets, starting with Bob Books, Set 1: Beginning Readers, by Bobby Lynn Maslen. These very short and simply illustrated books were a huge hit. Right around when the boys turned 3, Malachi wanted these read to him over and over and over again. 

Now that they are almost 4 and read everything, everywhere, they are starting to get into punctuation. They find it immensely funny when my husband reads a story and says the punctuation out loud, such as: "It was a dark and stormy night period. The wind was howling exclamation point!"

This morning Malachi told me: "I want to sit in your lap, dot-dot-dot." Then we opened an Easter package from their Nana:

"What do you think is inside the egg?" asked their dad.

"Money, question mark?" asked Malachi as it jangled open.

"Money, exclamation point!" confirmed Jaden.




JJ reading "The Hungry Caterpillar" to Malachi. from Shasta Kearns Moore on Vimeo.


Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 




Friday, April 18, 2014

Spring Color at the Tulip Festival!

We had a fabulous time at the Wooden Shoe Tulip Festival in Woodburn today. Enjoy the spring colors!











Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Thursday, April 17, 2014

How to Answer the Screen Time Challenge (Especially with Challenged Kids)



"Screen Time" is a BFD in our house. Episodic wars are fought over it throughout the day, every day. Limiting young children's exposure to technology is difficult in most households, but when you have a child who requires a whole lot of assistance to do much else, it's nearly impossible.

During our medical trip to New York, for example, all screen time limits were off… and Malachi happily played on his iPad and watched TV for hours and hours. There was no point at which he was tired of it. No point at which, when it was time to turn it off, did he not have a complete meltdown.

And I know that lots of people are out there telling you how terrible screen time is for young children. Even after updating its recommendations last fall, the American Academy of Pediatrics still says children under 2 should have no screen time at all and after that less than two hours per day.

I don't think screen time is evil. Screens are now everywhere in our homes, in our classrooms and in our social lives. Heck, I'm glued to my phone all day long. I even believe that at some point, children without touch-screen literacy will be the ones singled out for intervention. 

That said, I do think that limiting screen time: 

  • forces me to be creative in how my children spend their time; 
  • limits their exposure to violent, sexual, aggressive, amoral, age-inappropriate and frightening imagery/language;
  • allows me to be aware of what they are watching and reinforce the positive lessons in their real world lives; 
  • gives my kids a chance to interact with and learn about the physical world.

Still. It's really difficult. I felt like I was spending my entire day keeping the kids away from screens just so that when Dad came home, he could hand them the iPad and relax. Didn't quite seem fair. 

So I found this post last fall on One Perfect Day and made a Screen Time chart like hers: 90 minutes per day with 10 minute "tickets" that the kids can spend pretty much as they wish. Except: no more than 30 minutes at a time, at least two hours of break in between and no "rollover" minutes to the next day. (However, no rules for people gracious enough to babysit and when kiddos are sick.)



It wasn't working so well. My kids never really embraced the "saving up tickets" idea. They are the type who will use up ALL of the screen time they possibly can and then whine intermittently throughout the intervening time. It was getting to the point that they were arguing to have 90 minutes at a stretch because they still had tickets even though it had NEVER worked like that. Also, sometimes there were special occasions or interminably long days where I needed some extra time but it's not like I could fight with them all day on sticking to the chart and then give up at the end of the day. 

So, here's my new solution:




This is a 8.5 x 11 laminated sheet with 4x2-inch laminated 30-minute "tickets" for morning, afternoon, evening and "extra" screen time. Each ticket is affixed with sticky-back Velcro. The space where the ticket goes on the chart lists the requirements needed for screen time. For example, in the morning, they need to eat breakfast and get dressed first. The "extra" ticket can be given or taken away with good or bad behavior.

The kids helped me make it by picking out the color of their tickets and feeding the pages through the laminator. They were SUPER excited about this process!

So far today it's been working well and the kids seem less upset and confused about when they can play Angry Birds. Wish us luck!



Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 



Wednesday, April 16, 2014

What Makes a Little Girl?




The yellow field flowers were out in bloom so we spent a moment picking some. Then the boys asked (demanded) to put them in their hair. I pulled out some bobby pins from mine and skewered them to the sides of their heads.
JJ just ran off; mission accomplished. But Malachi said excitedly: "Now I'm a little girl!" I laughed and said: "Yep, now you're a little girl."
Malachi thought for a long while and then said: "To be a baby boy, you do nothin'."
I laughed for a long time then but didn't know what else to say. Just 3 years old and already learning that little boys can just be little boys but little girls require something extra.

Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Tuesday, April 15, 2014

A Great Book for Understanding Kids' Sensory Triggers

Someone recently gave me a copy of Understanding Your Child's Sensory Signals: A Practical Daily Use Handbook for Parents and Teachers. I love it!

This book is chockfull of practical strategies and helps explain why your child is "Afraid of the Car Wash" or "Sucks Stomach in as Far as Possible, Then Puffs it Out," or "Dislikes Wearing Shoes and/or Socks."

It's not a long, laborious read. You look at the Table of Contents, find something your kid does and then flip to the page to read a couple paragraphs about why he does it and how to help. Easy!

This was designed for kids with Sensory Processing Disorder, but having been in a preschool classroom for much of the last year, I can guarantee that this would be useful to any parent. All babies and young kids have difficulty dealing with our modern world because it is so weird and frightening!

I love the table of contents, too, because reading through it, I get a sense of how wide the range of sensory triggers are. It's nice to feel like I'm not the only parent in the world dealing with them!

Angie Voss' explanations are kind and positive. You can tell she really thinks about where the child is coming from and gives them the benefit of the doubt that they are not just "acting out" but might have a legitimate reason for certain behaviors.

UPDATE 4/22/14: I forgot to mention a few things! First is that they have a pretty cool website called A Sensory Life. Second, she often mentions a "bubble mountain" as a strategy for working through issues, but I couldn't figure out what that was until I Googled it. Behold this fun and calming activity!





Check out a copy from your library or buy it on Amazon by clicking on this picture!








Grab button for Special Needs Tip Tuesday!
<div class="Outrageous Fortune-button" style="width: 150px; margin: 0 auto;"> <a href="http://www.outrageousfortune.net/search/label/tip%20tuesday" rel="nofollow"> <img src="https://lh3.googleusercontent.com/-pfDLc6CZMNI/U0N90smYK8I/AAAAAAAAC3M/-rGNPvh4MDo/s250-no/Tip+Tuesday.jpg" alt="Special Needs Tip Tuesday!" width="150" height="150" /> </a> </div>

Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 



Monday, April 14, 2014

How Video Games Could Teach My Kid to Walk

Dear Video Game Developers,

Wanna do something really cool and meaningful? Develop a game system that teaches my kid how to walk.

I'm not kidding.

I can clearly see in my mind a long roll-out pad for the Wii. You place the child on it and he gets certain rewards for each teeny, tiny new milestone. Study child development and see how certain leg movements are the building blocks for crawling and standing. You could have whole levels devoted to pelvic movements. The sky's the limit.

See, when typical babies are hanging out all day, they are constantly experimenting with different movements and stumble across the rewards and penalties for such movements. No baby has ever thought: "I'm going to learn how to walk." They just play around with their body until it does what it was designed to do.

The problem I'm finding as my son approaches his fourth birthday is that motivating him to roll over and crawl is immensely difficult. He is no longer a baby who is easily rewarded with something shiny — he needs a much bigger stimulus.

There is not a lot he won't do for the iPad though. He has learned a lot about sitting and hand-eye coordination by playing it — not because he is "working on" those skills, but because it is what's needed to reach his goal in the game. This is precisely what babies do when they take those first steps. They are not thinking: "I'm going to put one foot in front of the other." They are thinking: "I want to be closer to mama." Walking is simply a means of achieving their primary goal.

I know that "child development" and "video games" tend to be at odds in our culture, but I think that's precisely because they have a remarkable ability to tap into neuroplasticity. This can be bad if you are using video games to imprint violence and objectification of women, but you could also use them to quickly and effectively teach useful skills.

Take for example this woman. She is a video game developer who suffered severe depression after a concussion and the only way she found to get out of it was to create a video-game-based reward system for taking the small real-world steps to improve her life.





I know from friends with kids who have cerebral palsy but can ambulate that games on the Wii have dramatically improved these children's coordination and balance. But so far there is nothing like that for kids who are still on the floor.

We still try with Malachi's walker. We play a dance game on the X-box 360 Kinect, but he isn't really affecting what's going on and the walker imposes bizarre rules of gravity. One of Malachi's absolute favorite outings used to be going to the dance pad at a nearby mall. Look how fast he goes in his walker to get to it!




Malachi running to the dance pad! from Shasta Kearns Moore on Vimeo.


Unfortunately that was several months ago and the dance pad is now decommissioned. It was a very sad day indeed for Malachi when we found that out. 

But he remains strongly motivated by video games. His new favorite meal is Super Mario-shapes chicken noodle soup, but he rarely ate pasta before that. 

I can't imagine my kid is the only one. So, please, video game developers. If you wanna do something amazing, develop a game that helps motivate older children with developmental disabilities — several million individuals worldwide — to practice the same developmental steps that typical babies go through. I know at least one little boy who would really get into it. 

Jessie Kirk Photography



Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


Sunday, April 13, 2014

My Most Favorite Page on the Internet

I'm calling in sick today. This is the third day in a row that I've woken up with a migraine, which I'm desperately hoping is not a new trend. Usually I can kick it with Excedrin and it disappears for several weeks. Add to that, the boys' tummy bug came back with a vengeance last night so I need to help tend to one very tired and sick boy and one perfectly awake and energetic boy. 

Fortunately, I will not leave you, dear readers, without enlightening reading material as I have recently discovered My Most Favorite Page on the Internet. The words, the pictures, everything. I love all of it. 

Enjoy! And let me know what you think. Number 27 has always been hardest for me. Which one do you like the most?

Saturday, April 12, 2014

Friday, April 11, 2014

Have Kid with CP; Will Travel

Flying with a three-year-old is never fun. Add to that an enormous amount of luggage to keep said three-year-old upright and you have a ghastly mix.

A few days before our recent surgery trip to New York, I acquired a hand-me-down medical stroller just the right size for Malachi. This thing is pretty robust and has those metal loops used to tie it down inside accessible vehicles. I was stoked because I thought it meant that we could just roll it onto the plane, they would remove a seat, lock the chair down and then Malachi would happily play with his own tray for the whole flight.

I was wrong. Apparently most airplanes (I hear Southwest is an exception?) have zero accommodations for people in wheelchairs. The standard process is to roll yourself down the gangway to the door of the airplane. Then they either move you bodily or with a sling-like mechanical Hoyer lift into a narrow "aisle chair." From the aisle chair you are moved bodily into a regular seat, where hopefully you can keep yourself upright. Meanwhile, your very expensive and very personal wheelchair is rolled away by strangers into the luggage compartment, where things can (and do) fall on it. As you can imagine, this makes air travel unappealing for most people with disabilities. An easy fix would be to have a removable seat in the handicap aisle but it seems there is not very much momentum for that idea.

As it was, on the eve of our trip, I have to figure out how I am going to handle Malachi's seating needs, not only for the flight, but once we had arrived. Fortunately he still fits in our go-anywhere Maclaren Volo Stroller .




I love this thing so much. I don't know what we will do when he grows out of it.

Anyway, then I needed to figure out how to put Malachi in the airplane seat and what I would use for a feeding chair. I complained about these things to a local United Cerebral Palsy forum and the parents there said they've had to use FAA-approved car seats to lock in their kiddos. I knew from a previous short flight when he was 2 that the fold-down tray would be too far away from him and I was not about to strap him to a seat for five hours without something to play with.

So, here I am carting a stroller, a non-mobile 3-year-old, a car seat, a tray, a diaper bag and a backpack through the airport like a madwoman.

The flights themselves were fairly uneventful thanks to the magic of the iPad and two very pleasant seat mates. Annemarie of Vancouver and Cheryl of Portland, wherever you are, thanks for your help!

This Bambinos Tidy Table Tray is one that we got a while ago at Babies R Us. It is very handy as it snaps on directly to a table, but we use sticky Velcro to strap it to his car seat and it can go anywhere.





But wait. There's more. Because I didn't talk about checked luggage yet did I? I had a massive roller suitcase packed as lightly as I could for nine days on the road. But the real problem came from the Mulholland Walkabout pediatric hands-free walker that I brought. In hindsight, I really SHOULD NOT have brought it, but I had the impression that the doctors would want to see him in it and that it would be necessary for post-operative recovery. Neither of those were true.

Instead, I carted this very heavy and awkward thing all the way across the country and back for no good reason. At the PDX airport, the desk attendant was about to charge me luggage fees for it but then I remembered the magic phrase I had heard from another mom on the UCP forum: "orthopedic device." As soon as I said those magic words, the check in process went smoothly.

I had also heard from others that baggage carriers are not as gentle as we might like with our children's medical equipment, so I wrapped both pieces of the walker thoroughly in bubble wrap and plastered Fragile stickers all over it. Nevertheless, when we got to our lodgings on the East Coast and unwrapped it, it was clear that three of the adjustment screws had been snapped in half and a piece holding down a protective cover was broken and just dangling. Now that we are back home, I've also noticed that the metal frame has been compressed by something very heavy indeed. We are working with Delta to repair the damage.

Unfortunately, on our return flight from JFK airport, the magic phrase "orthopedic device" opened no doors. Instead, I had to explain three times to different attendants what the walker was for and why they shouldn't charge me for it. Meanwhile, my son is waiting in the car and I am getting very anxious about it. Finally a woman very rudely tells me that I need to go get him to prove that he is disabled. (WHY ELSE WOULD I BE TRAVELING WITH A PEDIATRIC WALKER??) By the time all of this is resolved, they can't figure out how to reprint my claim tickets, so they tell me they voided the transaction and ask for my card again. Sure enough, when I get home I discover they charged me twice for my one piece of luggage, so I essentially had to pay for the walker anyway. More than an HOUR after I began the check-in process, we were finally on our way.

I got through security and collapsed into a restaurant seat near our gate, with all of our carry-ons scattered around us, and had a drink. Or two.




Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 


*Updated from the original to include link to Bambino Tidy Table Tray.

Thursday, April 10, 2014

WATCH 3-year-old's Pure Joy When He Can Drive Wheelchair for the First Time

The process of getting a power chair is long and arduous! It took us a long time to get this one and by then it was winter — dark, yucky and sometimes icy outside. On the little bit of practice Malachi did get, it became clear to me that the head control switches we'd gotten were not a good option. Malachi had a very love/hate relationship with his chair. He loved making it go forward (pushing his head back), but he wanted to see the wheels going around and around so he would bring his head forward… and it would stop. Extremely, mind-blowingly frustrating for this little boy. It was getting to the point that if I asked if he wanted to be in his chair, he would start crying. Not exactly what I had envisioned.

So we finally got the company rep back out to position the attendant (i.e. MY) joystick control to the front of the chair so that Malachi can use it. This led to this outing which is pretty much the first time he is in full control of his chair. He thought it was hilarious to be able to go backwards and spin in circles — something he's never been able to do by himself before.



IMG 8287 from Shasta Kearns Moore on Vimeo.


Here's hoping we can get the company rep to get back to us on switching out the head control set for a real joystick. You would think it would be easy since they are more common and cheaper, but we've already been waiting two weeks with no response. In the meantime, if anyone out there in cyberspace wants to trade theirs, let me know! You would sure make this little guy's day:




Backwards! Circles! from Shasta Kearns Moore on Vimeo.

P.S. The MSRP on this bad boy — a Permobile m300 with lift and tilt — is more than $48,000!!!! Now, that's an imaginary number because nobody actually pays that — insurance companies negotiate it down, then we're stuck with the co-pay, etc. But when somebody hands you a bill with that number on it, you take notice! That's several times more expensive than my car! And I'm letting a three-year-old with questionable depth perception skills drive it! Good thing it comes with a parental "kill" switch!


Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

Wednesday, April 09, 2014

... You Might Be a Special Needs Parent




Alright, so this cultural reference is going to be about two decades too late, but I think it's funny, so here goes!

(BTW, many of these could end "You might be a multiples parent" too! Twins, trips and beyond definitely qualify as extra needs!)

If your car looks like you abandoned it during a zombie apocalypse for at least an hour after you return home... you might be a special needs parent.

If you are shocked into silence when a therapist starts actually treating your child on the first visit.... you might be a special needs parent.

If you have 10 pounds of food in your car but none of it is designed for your own consumption... you might be a special needs parent.

If you have your health insurance company on speed dial... you might be a special needs parent.

If you have become accustomed to quintupling your estimate of the price of equipment... you might be a special needs parent.

If you have triangulated the location and description of every type of item available for sale from a drive-thru window in a 15-mile radius of your house... you might be a special needs parent.

If you often pass by a store on your way to an identical store 10 miles away because it has some minor difference that makes it slightly easier for you to navigate with your child(ren)... you might be a special needs parent.

Got any others? Leave them in the comments!



Feel free to share this post using the tiny icon buttons below and if you haven't subscribed to my RSS feedliked me on Facebook or followed me on Twitter, there's no time like the present! 

Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 

LinkWithin

Related Posts Plugin for WordPress, Blogger...