SEN Teacher...it's for EVERYBODY!

One of the greatest finds on the Web for educational materials is SEN Teacher.  If you have never visited this incredible site, then today is your lucky day! SEN Teacher was developed for special educators, but it has a goldmine of goodies that are extremely helpful at home and in general ed classrooms as well. I used this site a lot when homeschooling and with general ed students as well as my kids on IEPs. Did I mention that it is free?

Home screen for SEN Teacher

The site is very well organized; so much so that it is rather pointless for me to take you on a “guided tour.”

The printables sections alone are amazing resources that makes this site worth your time. The activities meet the learning needs of students at every difficulty level, so even high school math teachers will find some hidden gems in the math section. Even worksheets that look at first glance to be elementary can be customized to reinforce some pretty challenging skills.

I love, love, love the math worksheets, which are fully customizable. Even coin values are customizable for various countries, from USA to Euros to Australian coins. There are 26 different customizable printables for math alone! The clock and money worksheets are some of the clearest to read that you will find on the Internet.

One of my very favorite math activities with second graders uses the Number Square worksheet. Print up the page using only a partial fill (50% or 75% of spaces left empty) and have students fill in the blank spaces. You can also set it to skip count by 2’s, 5’s, or other increments (great for older students practicing multiplication facts). Once the kids are good at this, cut the sheets apart into jigsaw shapes along the lines. Children fill in the blanks of their own piece and then work together in small groups to fit the pieces to a complete a full table.

Number Square set to 50% fill.

The literacy printables include lots of fine motor and handwriting practice, as well as early phonics and site word skills. Again, you can customize most of these sheets to fit the needs of your particular students

The “other” printables has some things you must see if you need picture cards (for any reason, but especially for symbol communicators). Check out the AAC Photo Cards, which is a truly fast and customizable card printing tool. It is one of my all-time favorites for photo image symbol cards because of its ease of use and limitless library. Just type in the words you want on the sheet and SEN Teacher searches through a half-dozen copyright free sources for high quality images to match. If you don’t like a particular image (say, the background is too cluttered), you can repeat the search until the program opens an image you like. You can narrow the searches tightly too; don’t settle for “dog” or “goat” when what you want is “Golden Retriever” or “Saanen.” The AAC Photo Card search can handle your very specific request! Oh yes, it also comes with pre-authored sets if you just need a quick group of “farm” or “school” words.

AAC Photo Cards allow you to create photo symbol cards
to meet very specific criteria in a matter of seconds

If I could change one thing about the AAC Photo Cards, it would be the ability to assign a mix of border colors on a single page. But you can get around this a bit by putting all nouns on one page (print with orange borders), verbs on another (print with green), etc.

On this “print other” tab, you will also find a number of emotions activities using realistic photos. I have a bit of a stretch seeing how a few of the expressions show the assigned emotion, but overall, it’s a great resource for children who need practice at reading expressions.

You will find fabulous online resources through the “web links” tab, including information on various disabling conditions, additional educational resource links, and a collection excellent special needs sites.

The “downloads” tab shares dozens of free games and other resources that can be downloaded to reinforce any number of learning areas, including math, computers, science, communication, art, and other areas. It’s a great place to find games for extra practice…have fun looking them over!

SEN Teacher is one of those amazing resources that you will wonder how you ever lived without. Even if you are a parent looking for some great activities to reinforce the academic and social skills your child is learning at school, this is a valuable link to add to your Favorites bar!

Have a lovely weekend,

Rose-Marie

A Case for Exploration (AAC style)

Think, for a moment, about the value of simply exploring something new…

What’s the first thing you do when you get a new tool (a drill, for example)? Do you unwrap it and turn it over in your hands to look at it from every angle? Do you feel the weight of it and the texture of its “skin?” Do you locate and press all the buttons and turn all the knobs (before you turn on the power, of course!)? You might even—gasp!—read the manual (or not).

My guess is that you do. Unless you are already an expert with the drill, you probably familiarize yourself with this new toy before you create an heirloom woodworking project. Me? I’d need to do this even before just drilling a pilot hole in the wall to hang a picture.

Now think about our kids who need augmentative tools to communicate. They absolutely need time to familiarize themselves with the tools before they can use them efficiently and accurately. They need time to explore without pressure of performance. While this is important even with simple single switch voice output, it is critical with complex computerized devices.

What does exploration look like?

--Exploration is extended time with no pressure to perform.

--Exploration helps children understand the physical requirements of the device…where to touch, how much pressure to use, how long to dwell with hand or gaze.

--Exploration lets kids play with navigation between screens or activity rows. It lets them learn where vocabulary is stored and the key sequences to call up that vocabulary.

--Exploration lets children learn by trial and error without any penalties for those errors…and this can be highly motivating!

We also know from educational research that information that is “discovered,” rather than “taught,” is most easily retained. Letting children discover how to use their devices will help this learning stick. If, as they explore, they come up with questions and problems, the suggestions we offer will have much greater meaning and be more likely to stick as well.

Exploration doesn’t look like…

… being asked for responses to specific questions

… enduring endless prattle in the background

… being interrupted with comments or questions

…Mom/teacher/therapist breathing over your shoulder

…perfect grammar or syntax

It also isn’t “errorless,” in the sense that a child has no opportunities to make mistakes. It does allow the child to make errors but there is no penalty for “saying the wrong thing.” Instead, children learn what they did incorrectly so they avoid doing it again.

Thanks to an incredibly generous loan of a voice output device from a dear friend, our daughter has had the opportunity to explore without pressure. And the payoff is starting to come.

Remember awhile ago when I shared my concerns for my daughter’s communication shut-down? Since then, we’ve been giving her time each day, 30-45 minutes, to simply sit with this borrowed device and a reflective dot to activate the head tracker (not her best access method, but it’s what we have available right now). There are no questions to answer, no directions to “say this” or “tell me that.” The only thing we do is respond to what she says.

Some of her exploration finds her on a screen she may not have planned to go to, but exploration gives her freedom to make something useful of that screen. It brings to mind the old adage of “making lemonade out of lemons.” Certainly she learns plenty as she navigates her way out of this unfamiliar territory! We suspect that is how she managed to request that I call a friend of hers who lives out of state to send greetings. You can bet I called her friend’s house right away!

Days later she was able to create a deliberate message requesting that her caregiver come sit with her at the device. This even included a response after the caregiver promised she would. It was a very exciting morning, to be sure!

Exploration seems to be helping pull her out of her communication slump.

Do we expect perfection? No!!! This is a time to learn and work out navigation for herself. It’s not time yet to pressure her to perform…she has a lifetime ahead of her for that. Today it’s quite enough that she simply explore. The more exploration time she gets, the more meaningful the things are that come up on her device’s message window. Pressure isn’t going to improve that. Time is.

Just like that heirloom woodworking project where results matter, our kids’ communication matters. Let’s make sure they have the time to explore the tools they need before we expect them to produce meaningful results.

(Photo by Samuel M. Livingston at Flickr)

The 90% You DON’T Hear About…

The Internet is both a blessing and a curse. This is especially true for the world of educating children with special needs.

As a blessing, the Web brings together families whose children suffer from a wide range of disabilities. Often these children have unique learning challenges and the Web offers a means for sharing ideas. Parents can partner together in support groups that would be physically -- and geographically -- impossible otherwise.

This is also true for educators working with special needs populations. Teachers and therapists can share strategies and resources across continents, time zones, and experience. Help is right there for the asking (or searching). What a terrific support for “low-incidence” teachers who may be the only staff member in their district providing services to this group of marvelous, challenging, inspiring students.

What a wonderful time we live in, when ideas are freely shared and emotional support is generously offered!

But the Internet also has a dark side. It taints the views of both families and of teachers by an unfair portrayal of the educational system. Very often, all we see is 10%* of the picture. And that 10% does not represent the whole.

(*10% is a number pulled randomly from a hat; I have no statistics to support this. It simply expresses a minor percentage of the bigger view).

Allow me to illustrate.

Last summer our family got a pair of baby goat kids. Being completely new to the goat scene, I read every book and website I could get my hands on. Now, from the online goat forums I read regularly, you would get the impression that goats are the most fragile, sickly critters ever to walk the face of the planet. How in the world have they survived thousands of years as livestock in countries where veterinary care is unavailable? How have they survived thousands of years before that in the wild?

The truth is, goats are pretty hardy creatures. But they aren’t found in every neighborhood. Folks in the United States who keep goats rarely have many local resources to draw from, so when their livestock faces a rare illness, they turn to Internet forums with their questions about goat health. Thank goodness for the Web so they can get answers!

Owners of healthy goats don’t have questions about goat illness, so they sit back quietly.

Does that mean goats are frail creatures? Not at all. It simply means that the online forums are disproportionately weighted with questions about goat illnesses because it is a convenient venue. That’s all. No one is intentionally misrepresenting the hardiness of goats. It just comes across unbalanced because the 90% of goat owners with healthy animals don’t sing praises of goat health.

The same is true for online parent discussions about special education.

Parents on Internet support groups commonly bring their questions and complaints before these groups because they have nowhere else to turn. The rarer the disability, it seems from my limited experience, the fewer the options for seeking help and the more this airing-of-concerns is likely. The ten percent of these families who have difficulty with appropriate placement or IEP compliance are highly visible.

We rarely hear the educational success stories of the ninety percent majority. After all, how much is there to discuss when everything is going well? How much is there to say about an IEP meeting where everyone has the child’s best interests in mind? If everyone at the IEP table agrees on what will make the most appropriate program, how much is there to report to the group?

Families new to these Internet communities read the complaints of the minority and conclude that these problems are the norm, rather than the exception. I see it all the time. Preschool parents getting ready for a first IEP meeting ask where to find a lawyer to bring to the meeting. Gulp! Why do they assume the situation will be adversarial? They’ve never experienced a negative encounter with this school staff, yet they are bracing for battle. Given the imbalance of horror stories to successes reported to online parent communities, it’s understandable. But it’s also unnecessary.

I bring up this darker side of Internet support to shed a little light on the discord that sometimes happens between families and schools.

Parents need to understand that online forums, by their very nature, present only a portion of the whole picture of the educational system. There are many children thriving at school. We just tend not to hear about them. Yes, there are real concerns and real injustices to be corrected. But they receive a disproportionate amount of air time. This is not the experience of the majority of families.

Educators generally go into education with a desire to help children. Teachers who chose the special education path tend to have a heart for the underdog. We all know that the vast majority of our educator peers truly want to do the right thing for children. So why are parents quick to assume we don’t care or haven’t the expertise to help their son or daughter? Part of that has to do with the lopsided Internet conversations and nothing to do with what actually happens around the IEP table. Of course there are the exceptions; of course parents need to be versed in the laws that protect their children. But parents don’t need to presume the worst.

Educators need to realize that parents sometimes get skewed information from online forums. It makes our job harder as we set out to prove that we really do care about their children and have expertise to meet their learning needs. It isn’t even that the parents want to be adversarial, but that they have been presented with a lopsided view. That imbalance may not be intentional; it just is. It may mean we have to work a little harder to overcome misinformation and to build trust.

That’s just how it is with the brighter and darker side of online support groups. Maybe it’s time we start sharing more of the bright stories…

Do you have a bright story to share? Please tell us...

Murphy’s Law Revisited

Water dripping on your head from the upstairs bathroom through the ceiling below is never a good thing. It isn’t related to special needs, but it adds more corollaries to our little collection of Murphy’s Laws.

And so, I present to you these corollaries, both for your entertainment and as bit of an explanation for why things on the blog have been quiet this week:

1) The room that has been most recently remodeled will be the one to suffer from disaster-requiring-major-repair.

2) For families living with access issues, that room will also be one that has been remodeled for access.  In our present case, it is the only handicap-accessible bathroom in the house.

3) The timing of said disaster-requiring-major-repair will come when the schedule has least flexibility.

4) Aging features in a house that fit neither your needs nor tastes (i.e. carpeting much too uncomfortable for the amount of time a non-ambulatory child spends on the floor, and horribly ugly to boot) will last and last and last…and…last…interminably.

5) The budget for replacing these aging features will be needed to repair the room (fence, barn, fill-in-your-own-blank) remodeled just last year.

The good news is that my husband is quite handy. It seems we have caught the slow leak before dry rot set in. The weather is being cooperative for drying out lumber and for carrying new waterproof drywall from the home center. The repair should correct the problem that should never have happened in the first place.

But the nasty carpet will be here another year…

Sneak Peek at the Next G-tube Clothing Tutorial

You are supposed to get a full tutorial this evening, what with today being Tuesday [editorial note: it WAS Tuesday when I worked on this "quick" post. Ha-ha. Blogger does NOT play nice with photos and I need to go to bed before frustration drives me to do something drastic to the laptop. It's not the computer's fault. As a result, this won't get posted until Wednesday. My sanity is not worth the fight. Huge apologies!]. Instead, you get a teaser. Here’s a sneak peek at good things to come, the inseam g-tube access openings!

So many, many possibilities for these two handy techniques! Picture this in a frilly party dress, or a tiered sundress in fun bright prints…



Here's an opening on a gathered skirt...



...so you can get to the g-tube.


…Or this in a sophisticated princes-seam dress, or a little boy’s tailored coveralls…

At least you get to spy on the final samples. It’s the how-to pics that aren’t ready yet, so stay tuned.

Any of you who create online tutorials know just what goes on behind the scenes of a pictorial lesson. Whew! There are some amazing bloggers who post lovely online tutorials several times a week. They make it look so easy; that’s part of the magic. There is a LOT more to it than simply snapping pictures as you merrily sew away…hah!

Given our family schedule this past week, I was pretty pleased to have finished mock-ups to share. Next week you can have a step-by-step play on how to recreate these same openings to access your child’s g-tube.  

In the meantime, why not go shopping for a pattern and fabric and some fun trims? Look for a garment design with a seamline that falls several inches above the waist. Copyright issues mean I can’t post the pattern pictures here, but a quick click will take you to some possible choices:

McCall’s 6155 (girls flared or gathered top, easily lengthened to a dress)

McCall’s 6268  (flared toddler dress)

Butterick 4054 (toddler dress with gathered waist)

Oliver + S School Photo Dress and Tea Party Sundress, both vertical openings

New Look 6451 (princess seams, vertical openings)

New Look 6041 (toddler dress horizontal or vertical options)

Simplicity 2377 (girl's tiered sundress)

Simplicity 2264 (baby boy suit)

McCall’s 4236 (infant saque)

There are lots of GREAT vintage patterns that work well for adapting to g-tube access too!

Disclaimer: I haven’t used any of these particular patterns (my kids have long since outgrown these sizes), but they can give you an idea of styles that work well for these adaptations.

So many, many possibilities for these two handy techniques! Picture this in a frilly party dress, or a tiered sundress in fun bright prints…

You might also find some inspiration here:
Sewing Clothes for G-tube Access, Part One: DESIGN

G-tube Resource RoundUp

Here you go! As promised, here is a list of resources to support families of kids with g-tubes. Of course, we could always use more! If you know of others, please add them in the comment section. I’ll keep the list updated so it’s easy for folks to bookmark them all in one spot. Thanks!!! I appreciate your help.

Rose-Marie

Organizations

The Oley Foundation (supports adult and child consumers)

A.S.P.E.N.  (professional support)

Feeding Tube Awareness (family support)

Listserves/Forums

            BabyCenter’s Babies and Children with Feeding Tubes forum            

            BlenderizedDiet.net forum            

            Yahoo Blenderized diet listserve           

            Yahoo Tube Feeding listserve

Blogs

            Adapting Creatively

            Ainsley Rae            

            You Start with a Tube

Clothing

            Tummy Tunnels            

            Special Clothes

Clothing Tutorials

            Grab-a-Scab at Adaptions 4 Kidz            

            G-tube Jammies            

            G-tube Clothing: Design            

            G-tube Clothing: Blank Canvas            

            G-tube Clothing: In-Seam Openings (to be posted soon)

Books and Informational Articles

            Homemade Blended Formula Handbook (Klein and Morris)

            Los Altos Feeding Clinic

            New Visions informational articles

            When Jeremy Jones’ Stomach Stopped Working: A story for children with g-tubes from mitoaction.org

Friday G-tube Favorites: Supplies

If you asked a hundred g-tube users to name their favorite tube-related supplies, you’d get a hundred very different lists. Everything is so specific to the child's and family's needs. And that's just how it should be, isn't it?

Today I’d like to share our family's list. My hope here is that it might expose you to particular supplies that address a need you’ve had. I’m by no means a g-tube expert (oh my goodness, no!), just a mom with 12 years of trial and error under my belt. There may be better things out there but these work for us.

In as organized an order as I can think of (now there’s a pathetic cause for laughter!), here are my favorites related to g-tubes and why:

PEG (percutaneous endoscopic gastrostomy) placement procedure: We opted for this method for tube placement because it involved the least risk for our daughter. It took less than 15 minutes and required no stitches. She was left with a 12” tube that we had to be quite careful about for the next few months until it could be replaced with a low-profile button. We didn't want that puppy getting pulled out! But we felt that minimizing the risks to our child was more important than the inconvenience to us as caregivers.

AMT mini classic gastrostomy button:  We switch to this brand and style of balloon button after a year using another brand. She stopped producing granulation tissue after we switched, in part due to the design of the button to increase air flow under the device. The AMT mini classics last an average of 6-10 months for us before the valve or water balloon give out. They sit flat against my daughter’s stomach and don't show through her clothes. 

Another consideration for choosing a balloon device was that I could change it out at home. We've always lived an hour or more from our Children's Hospital. My daughter's g-tube site only gives us about 5 minutes to replace the button or it tries to close, so we don't have time to get her to the hospital. I need to be able to get a new one in myself--and quickly!

Thankfully, it's easy to replace. I think of it much like an earring, only instead of a separate backing to click in place, you simply fill the balloon with water.


We care for the button and site by washing it in the tub with soap and a good rinse of water. It's important to towel it dry afterward. That's all we do; we don't use gauze or pads except with ointments.

Right-angle continuous feed extensions: The right-angle tip on this AMT mini classic extension holds securely, so we have rarely had any accidents where the tubing has come disconnected. The right angle works well for us to prevent any lumps of unblended food from passing into the button. It’s much easier to flush a clog out of the extension! The right angle is also very discrete under clothing. The plastic tubing stays soft; this is not true of all brands from what other parents have said.


Sween CriticAid Skin Paste:  Granulation tissue is an overgrowth of skin when the body tries to heal itself. Almost everyone receiving a g-tube will experience this; it is so common that nurses often forget to mention it. Our daughter had a bit of a battle with granulation tissue and we tried a number of remedies. We had it burned off with silver nitrate sticks. We used prescription steroid cream. We tried various oils. But a wise GI nurse shared the benefits of Sween’s CriticAid. That took care of the granulation tissue within days and it’s never come back.

Calmoseptine Ointment: We don’t often see redness or irritation around the stoma (thanks to the design of the AMT mini classic), but when we do, a healthy glob of Calmoseptine spread around the area clears it up in a day or two. We do apply a split gauze 2x2 over the skin after we put Calmo on, to keep it from rubbing onto clothes.

Enteralite Infinity feeding pump (formerly owned by Zevex, now Moog):  We feed our daughter 3 meals a day as fast as the pump can run. This pump runs at 600cc/hour, making it perfect for a meal (and the competition at the time we got ours only ran at 400cc/hr, though that has changed). It can run upside down or on its side, making it wonderfully portable. It’s small and lightweight and—best of all for us—it handles liquefied food that’s been blended at home. Just this past month, we received a new style of bags that I haven’t play with much yet, so the jury’s out on the performance of the new bags. The old style could be a bit finicky, curling at the bottom to block the flow of food.

Vitamix:  I can’t say enough good things about the Vitamix! It pulverizes food into liquid using a 2-hp motor. I haven’t found any food yet that it can’t grind fine enough to go through the g-tube. If we ever had a house fire, I’d grab the Vitamix as I ran out the door. It’s that good.


Coorstek mortar and pestle: I think I’d have arthritis in my wrist by now after all these years of grinding heaps of medications and supplements into powder for the g-tube, were it not for our Coorstek mortar and pestle. I posted about this wonderful pair in a discussion about medications by g-tube here. 

North Face fanny pack.  Since our daughter sits while eating, the standard issue feeding pump backpack isn’t comfortable for her to use. Instead, her pump sits in a fanny pack strapped across the front of her belly. This doesn’t interfere with sitting and it gives us good access to the pump when we need it. We really liked the size and padding of the North Face fanny pack we found, although she’s used other makes and models over the years that we also liked. I sewed a fleece “pocket” for the pump to protect it even more against bumps; the fanny pack holds that, the Infinity pump, and a pint of blended food.

Venting set: One of the benefits of a g-tube that we didn’t learn about until after our daughter had hers placed was that it can be used to vent excess air from the stomach. What a godsend! Air swallowing is an issue facing many kids with Rett and other neurological issues. To be able to relieve that air before it has to travel south to exit is a major comfort. For venting air, we like the bolus extension tube and the cylinder of a catheter tip 60cc syringe pictured here (we don’t use the plunger).

I’m sure I’ve left some out some favorite of yours. Please tell us what that is in the comment box. Thanks!

Homeblending experiences needed!

If you blend foods at home for your child's g-tube, your story is important! Would you be willing to share your story in a survey hosted here?

The purpose of the survey is to collect as much data as possible about consumer experiences with homeblended diets to share with medical professionals. This collective result could be helpful to doctors and dieticians and to the families they work with. Of course, your information is completely confidential.

Not every family is blessed to have as much professional support for the blended diet as we have had. But then, our dietician is extremely knowledgeable about the benefits of good nutrition on overall health. Our doctors see the evidence firsthand and are supportive.

If you could please spare about 15 minutes to answer some questions about your family's experience with blending food for the g-tube, it would be a great help. The link again, is http://youstartwithatube.blogspot.com/2011_01_01_archive.html.

Thanks so, so much!

Homeblended Foods for the G-tube

Getting the g-tube was the single most important action we have taken to improve our daughter’s health. The second was switching her diet from commercial formula to whole foods blended to go through that tube.

Ok, so this is Thursday and we’re supposed to be talking about communication. But I wasn’t sure when else to post about homeblending during Tube Feeding Awareness Week, and the topic is oh-so-important.

Every morning, I fill the counter with nutritious foods. One day it could be grilled salmon saved from last night’s dinner, carrots and spinach and cherry tomatoes still dewy from the garden, homebaked whole grain bread bursting with seeds and grains, a juicy ripe peach, granola with raisins and cashews, yogurt, olive oil, a hard-boiled egg from our family’s chickens. The next it might be grilled steak and Chef salad and garden potatoes and…you get the idea. These are good things that make a body strong. They all whirl together in the Vitamix blender for 6 or 7 minutes and pour out as a day’s worth of high quality, fiber-rich meals.

Why do we do this? Why not simply pop open a can of commercial formula? After all, that takes only seconds and the cost is covered by Medicaid. No shopping, no preparation, no clean-up. You don’t even need a can opener. It’s scientifically balanced and has added fiber.

Well, to be honest, we did the commercial diet for several years. The formula we chose was a food-based formula made with beef and green beans and peas and peaches, all in an apple juice base. It helped our daughter grow and get stronger, but something was missing. Mothers have a primal urge to feed their children and mine was left unsatisfied. I longed to create nourishment for her. You dads probably scratch your heads over this one, but it’s just an instinctive thing we can’t help.

For several years we took a side trip down the Ketogenic Diet road to gain seizure control, and the g-tube was a tremendous blessing for that! My daughter would have undoubtedly refused to eat the diet by mouth even if she would have been able to, because she can’t stand oily textures. But the g-tube made that excursion possible.

During her time on the Keto diet, our formula maker switched its recipe to include Benefiber. Big problem for her. Why do manufacturers presume universal tolerance? When she tried going back on her formula, the Benefiber gave her excruciating cramping and gas. I dreaded trying those formulas whose ingredient labels read like the inventory of a chemistry lab. She’s a kid, not a laboratory beaker. Her digestive reaction to them was too impolite to talk about, so let’s just say we were left with no option but to blend food for her ourselves. We’ll leave it at that.

Inside, my excitement rivaled that of a child being told their family is going to Disneyworld. All those pent-up mother urges to feed my child real FOOD were being soothed with the possibility of being able to nurture with food again.

The leap wasn't scary. We started slowly, using the same ingredients she had tolerated well when her formula was a commercial food-based product. We bought jarred baby food that went smoothly down her g-tube until we saw how well she tolerated the foods. Gradually I added in new foods, one at a time, and we saw good benefits to her reflux and constipation and intestinal gas. I counted calories and balanced nutrients to make sure her diet was healthy (for a great free program to track all this, try this one here). Before long, we applied to Vitamix through their medical necessity program to get a super-blender for liquefying whole foods. That way we could give her fresh fruits and vegetables and grilled meats. We could actually afford the cost of her new diet by blending ourselves; jarred baby foods drive the food bill sky-high.

That was nearly seven years ago and we haven’t looked back once.

We see good growth, with perfectly proportioned height and weight. Her muscle mass is good, given her limits to exercise, being non-ambulatory and unable to lift. I’m envious of her gorgeous hair and strong teeth. Reflux and constipation are well controlled now. She’s rarely sick and bounces back from illness quickly now. Her many doctors are always impressed at her general health and strong nutritional status.

Does blenderizing cost more than formula? Yes and no. Because we were paying nothing out of pocket for her formula before, and now we buy fresh ingredients for one more person, it does cost more from our family budget. But do you know how much insurance pays for a single can of formula? Multiply that times the 7 cans she would need over a day, and the cost for “medical” formula is exorbitant. Now, if it’s medically necessary, that’s one thing. But when it's just food that has been liquefied, then that is another thing entirely. Right now she needs a diet that is heavily mechanically altered, but she has no medical restrictions on what foods she can eat. I don’t feel right about having her food provided any more than I would for the rest of us oral eaters in the family. Especially when I can make her a week’s worth of meals for far less than a case of formula.

Does it take more preparation time than formula? Sure, but not much. I spend about 15-20 minutes each morning preparing her meals for the day. Included in that time is one spare meal for the freezer for use during travel or when I’m in too big a hurry to mix up a blend. That isn’t a huge time commitment.

Does it fulfill that mama-urge to feed? Absolutely! I get to orchestrate a whole medley of foods with strong nutritional value into just the right balance for her. Knowing that I can feed her foods that make her as strong as she can be feeds my soul too.

Meal preparation has moved back from the realm of the medical--popping open the top of a scientifically designed formula packed in a hermetically sealed can--to one of a mother’s expression of caring. The g-tube becomes simply another route to get food into the stomach.

The kids’ friends relate better to homeblended foods than to formula. The foods my daughter eats are familiar (ok, maybe broccoli and asparagus aren’t favorites, but the other kids know what they are! That’s more than I can say for “partially hydrolyzed whey protein”…). They’ve watched me throw a “peanut butter sandwich” in the blender to make her lunch…

            two slices of whole grain super-bread,

            a scoop of natural peanut butter, and

            a hefty handful of frozen blackberries (in place of jam)

            a container of yogurt for the complimentary protein

            a handful of carrots because they just go so well with a pbj sandwich

The main difference between her lunch and theirs is the route it takes to get to her belly. Maybe she’s got lots in common after all…

Obviously, not every tube-fed child is a candidate for homeblended foods. There are plenty of medical issues that rule out this option. When that is the case, we count our blessings that we have the luxury of commercial formulas that can keep this child alive and healthy.

But when it is possible for children to take nourishment in its most natural, unprocessed form, that can be a gift. It’s something to think about… (and if you want a little extra food for thought, check out Barbara's post "You are What You Eat" found here).

If you want to know more about blending foods at home for your tube-fed child, here are some resources:

Informational Books and Papers

Homemade Blended Formula Handbook by Marsha Dunn Klein and Suzanne Evans Morris

New Visions informational articles by Suzanne Evans Morris

Forums/listserves/Blogs

BlenderizedDiet.net forum

Yahoo Blenderized diet listserve 

You Start with a Tube blog (be sure to read this post on the pros, cons, and controversies)

Please share the posts from this week's topic on tube feedings! It's so nice to see the support and encouragement floating around the Internet this week. Thanks for being a part of this.

Tube feeding posts of interest:

Feeding Tube Awareness Week

Adapting to the G-tube: Our story

The G-tube at School

G-tube Jammies Tutorial

Sewing Clothes for G-tube Access:  DESIGN

Sewing Clothes for G-tube Access:  BLANK CANVAS

The G-tube at School

I can’t predict whether your child’s g-tube feedings will be embraced at school or whether they will cause fear and trembling. Policies that govern school districts and even schools vary from one place to another. And the attitudes of individuals are, well, individual.

What can you do to tip the scale towards creating a relaxed, supportive feeding experience for your child and their school staff? Here are some ideas that have worked for us…

1) Plan to meet with the team to talk about tube feedings before your child ever arrives at school. This is your chance to model attitude and set the tone. If you view the feeding tube as “just another route to the stomach,” that will go far to ease tension. At the same time, you want to reinforce the importance of good hygiene, safe food handling, and sensitivity to your child’s digestive issues.

This meeting gives you a chance to reinforce your child's individual strengths and needs. Is she quite healthy, benefiting more from the social environment of the cafeteria than from a germ-controlled room (if such a thing existed)? Are positional or rate issues important for preventing vomiting? Are there steps in the routine he can carry out independently, along with plans for expanding those steps?

Repeat these trainings every year. There is a good chance your school team will have new members, and that these folks may have never been around g-tubes before. Even if they have, your child’s needs and your attitude may be different from their previous exposure. Or even from last year.

            --share your child’s story about tube feeding. Knowing history helps put today into perspective. Seeing the personal side of a “medical procedure” (oooh, that sends shivers up my spine) helps make it less daunting. It’s also a vivid reminder that your child is a person, first and foremost; the “medical” aspect of their care is simply how their care is delivered.

            --demonstrate with sample equipment and let EVERYONE touch it (including all the aides; maybe especially all the aides). I have a kit I bring with me to each year’s staff training meeting. We go over the contents together and I encourage everyone there to try out the equipment. This isn’t training on the specifics of using the equipment, but sharing general information to help folks become familiar and relaxed. This is just a teaching kit; it is NOT the same supply kit we send to school for back-up or button failure.

Here’s what’s in our kit; yours may look different.

A gastrostomy button. This is one we had left over when we switched brands
and has lasted through about ten trainings. I fill the balloon with air
to show how it anchors in the stomach. I feel it’s important for people
to see the whole device—the outer AND the inner parts—
so they can identify it quickly if it ever got pulled out.

A “sample stomach.” The small hole cut in the lid of the can represents the stoma.
Of course the depth is all off, but it helps the staff see how
the button and the body work together.

An extension tube. We have everyone practice the “three/quarter turn” to attach and detach.
In a true emergency where the trained staff are unavailable to feed my child,
someone else is more likely to step up the need if they have had a bit of hands-on practice.
I think it helps them relax to realize the syringe has a slip-tip rather than a needle.

Daily items that I bring along:

A feeding pump. I want people to hear the alarm so they can identify it.
I want them to hold it so they are less intimidated by "equipment."

A feeding bag. I point out the weak areas to help them troubleshoot alarms.
Of course, now that the manufacturer has adopted a new style,
I have new weaknesses to learn about!

           --encourage questions. Answer them honestly. Again, you are modeling attitude. You are also providing information that will help staff answer student questions.

[Warning:  soapbox preaching ahead]  This personal meeting is such a critical part of your child’s care. Interestingly enough, when I Googled “g-tube at school” the articles that came up stressed the medical precision of feedings. They emphasized the involvement of the child’s doctor and the school nurse and following written orders and sanitary conditions…and completely omitted the personal aspect of the child and family. Not one of the professional articles on Page One of the search results mentioned asking parents to participate in training the school team, unless they hid this suggestion in fine print in the appendix. Do you find that as curious as I do? Obviously, safety and medical protocol are important. But so is the personhood of the child. Feeding nourishes more than just the body…

2) Send a complete set of back-up supplies. Knowing there is a back-up plan—and adequate supplies to carry it out—helps people relax. If the nurse and teacher know they have spares in case of a clog or leak or earthquake, they (and you!) will be much less stressed over the “what ifs.” It also reduces the number of times you have to rush supplies to school. Be sure to send replacement extras for those that get used during the school year. We make sure there are plenty of spare extension tubes, bags, syringes, and frozen meals. We also have a Foley feeding tube for emergency replacement of the feeding button. The school staff can't insert it, but having it on hand saves precious minutes if I have to be called to replace the button.

3) Be available to walk the staff through problems, whether in person or over the phone. Just as you would never leave your child stranded, the staff should not be stranded either. It’s good to encourage them to solve problems on their own, because we all gain confidence when we come up with solutions. Just be sure to leave out criticism if their solutions are different from yours, so long as they are safe, workable ones.

4) Minimize steps for the school staff. They will appreciate you showing your support by doing what you can at home to keep feeding simple.  We send bags pre-filled, tubing pre-primed, pump pre-set. We make lunch the last meal of her bag's 24-hour lifespan, so there is no need to rinse it out to reuse later. I’d rather see the staff working on meaningful goals with my daughter than busying themselves preparing or cleaning up after her lunch. Your child’s feeding routine may require that his staff do more than ours, but whatever you can do to minimize their efforts with feeding will go far to demonstrate your support.

5) Check back periodically to make sure things are going well. You don’t have to be a pest. So long as things appear from your end to be going fairly well, you can just ask every few months whether there are any questions or concerns. A simple email or note at the bottom of your child’s daily communication sheet will do.

Obviously, if you notice any glaring problems, such as half of each day’s lunch coming back home with your child, then do address your concerns immediately. There are many issues that could be standing in the way, and some are fairly easily fixed. Others may take some sleuthing. But it’s a team thing, and you are the expert on your child’s team…

Do you have any other suggestions for helping g-tube feedings at school go smoothly?

Other g-tube posts that you might enjoy reading:

Feeding Tube Awareness Week
Adapting to the G-tube:  Our story