Practice . . . I mean, Repetition . . . Makes Perfect

I thought I would give a progress update on Osiyyah's speech. If you've been following our blog for any amount of time, you probably know that one of Osiyyah's biggest struggles is with speech. We've been working hard on it for awhile. Longvida Curcumin has helped him tremendously as well . . . and it's almost been a year since we've been giving that . . . more on that in another post hopefully :).

With Osiyyah, constant repetition in having him say certain sounds & words helps him tremendously. Along with constant repetition in working on his oral muscles, especially his jaw. We've made progress in both areas, praise the Lord.

Osiyyah was on bite block #5 for a couple months. It took him some time to get it down, realize he needed to actually bite on it and hold it for me while I gently and very lightly pulled the bite block. He was doing very well with that and was up to 20-25 seconds per time for 8-12 times per side. So a couple weeks ago I decided to try bite block #4 and he did that beautifully. He can hold bite block #4 SO well for a good 25 seconds. I'm doing 6 times at the moment (25 seconds per time). We try to do it every day, but sometimes its every other day. 

The strength I can feel in his jaw is amazing. The progress we've made on that is absolutely wonderful. His jaw was so weak 8 months ago. I was in tears when we first tried the bite blocks. He wasn't getting anywhere and his jaw was so weak he couldn't hold it for a second. Praise the Lord for the tremendous progress Osiyyah has made.

We also work on lip rounding with the Button Pull activity from TalkTools. He does that very well too and his lips are quite strong too!

We're also working with Horn #2 still for lip closure. But, I think it's time to bump him up to Horn #3. We also use Horn #9 a little bit to encourage long breath. #9 is an airplane that gets louder the longer and harder you blow it. So, it's great motivation for him to get a good long breath, instead of just real short, shallow breathes.

Since Osiyyah's ST is trained in PROMPT she's been using that with him a lot. And therefore we've been using it with him a lot  . . . what she teaches us. He responds to PROMPT so, so well. It makes a huge difference in how he can say a sound. It's really amazing.

Which leads me to reconsider Apraxia. I thought he may have it over a year ago. The therapist we were seeing at the time, wanted to wait a year to reevaluate him. We've since changed therapists though.

I mentioned it to his current therapist a couple months ago and she didn't discount it at all. She said it could be a possibility. I think I will bring it up again in May when we see her, because I *really* think we are dealing with it. Just the way that he responds to PROMPT and cued speech so well confirms it all the more, in my opinion.

When I read up on Apraxia 15 months ago, it described Osiyyah exactly. But, then some things changed after we started giving him Longvida. His speech and language changed and improved so much, that I kind of disregarded the Apraxia issue. Maybe Longvida helped him so that he doesn't have it as severe, but it may still be there some. We'll see.

Osiyyah has a very hard time getting the ending consonant on a lot of words. And some times he'll have a hard time getting the beginning consonant on words. Like when he says "Bum", he only says "Bu", even though he can say the "m" sound and puts it on the end of other words, like "mom." It's very strange why he would be able to say some complete words with the ending sound, but then not be able to say other words that have the same ending (again, makes me think Apraxia). We're trying to teach him the "m" ending like "Bum", but with the word "Gum", since he doesn't really say that word much. We're making slow progress on both "Bum" and "Gum", but it'll be a lot more repetition before he can get that down. I was really close to getting him to say "Bum" this morning, but it's not quite there yet.

The "mmm" sound seems to be a very hard sound for him to combine into other words. For "me", he says "dee." We can break it down and have him say "mmmm" and then "eeee." But, trying to combine them, just doesn't work.


But, Osiyyah made a huge step in saying words this week. A couple days ago my mom was working with him on saying different words and sounds. She worked on his name "O-see-ya." Which are all sounds he can say. But, whenever someone asks him his name he says "Dee." So, after a good 20+ minutes of breaking down his name and having him say the sounds over and over again in a slow pace, she got him to say "Osiyyah." What a joy to hear!

We've continued to ask him his name multiple times a day and have others ask him his name (even the gals at the dentist office yesterday ;)) to get him to continue saying it. And of course we always say "good job, woohoo!" after he says it.

So, now I can ask my little man, "What is your name?" and will get a response of "Osiyyah", as clear as a little boy can be, and as cute as can be with his little "O" shaped lips all pukered out for that first sound :). Such a blessing, praise the Lord!

Osiyyah The Chef . . . Smartie Pants

A couple days ago I had Osiyyah in the house with me. I was doing some stuff on the computer and he was sitting on the couch looking through a Desserts cook book. Looking at all the neat pictures and asking us if the recipes had "no wheat" and "no cow" in them. In other words, gluten free and cow milk free :).

He finished looking through the book, got up and said he was going to make some food in the kitchen. I said, okay that's fine. I thought he would do what he has done before, just pretend play. No, he was serious this time :)!

About 5 minutes or so after Osiyyah went into the kitchen, mom came in and said,

"What's he doing? Who's watching him?"

I replied with,

"I'm watching him, he said he was going to make some food."

She says, "Well, he is making food."

I went into the kitchen and sure enough, he had a stool at the counter (at the stove actually). He had gotten a pan out of the cabinet, put it on the stove top, poured milk into it (about a cup's worth), poured some vinegar in it (he had gotten it out of the cabinet, poured it and put it away), got sugar out of the cabinet, put about a cup's worth in the pan, and had poured some seasonings into his mix.

All that in a matter of 5 minutes or so. Never asked for help or anything, he did it all by himself. We were all in hysterics and quite surprised at how he did it all!! Thankfully he can't reach the knobs on the stove to turn it out, so no danger there.

But, wow, he definitely surprised us all. And now, we know next time he says he's going to make some "pood" (how he says "food"), that we'll make sure someone is in the kitchen with him, haha!

Busy

Life has been busy since the last time I posted. A road trip to Dallas one weekend and then a road trip to NYC area/NJ last weekend. And then regular life in between. Yeah, crazy.

I just got done writing an article for our local Down syndrome association monthly newsletter. The article is titled "A Mission of Hope, Truth & Acceptance" and is about our book, Connecting The Rainbow and the orphanages and institutions in European countries. I'll post it here once it is proof-read and good to go :).

We're also getting together an entry for Osiyyah to be in the 2011 calendar that our DSA puts out. That should be fun.

I'll try to post something a bit more interesting and good research sometime soon here. I do have some stuff I can post up.

Oh and since I mentioned our book, the company it is printed through is offering a code for free shipping. The code is FREEMAIL305 and is good until May 1st. Again the book can be ordered through http://stores.lulu.com/gotdownsyndrome

Until next time,

Life On The Ranch: Green Is Coming!

orry, the blogging has slacked for the last week and a half. Life has been busy . . . as usual ;).

Spring is here. Everything is slowly turning green. The bunnies feel the warmth of spring. Babies are filling the nestboxes (23 babies to be exact). The fresh smell of green grass & flowers is in the air. The frogs & bugs are starting to come out. And the sounds of summer are slowly coming.

Today Osiyyah, Ezriyah (my 19 y/o sister) and me went on a walk around our property (it's a square mile, which is a nice walk).

Here are a few pictures from our walk today.

...The goats (does) all waiting to go out to pasture...

...the bucks & their guardian dog following us out...

...and at the end of the walk, the kids stopped to throw rocks in the pond, as usual :)...

We are truly blessed to live out here! It's so much nicer than California . . . in so many ways!

Osiyyah continues to not have any reflux problems since cutting out all gluten. Which is such a blessing! We successfully made gluten-free strawberry shortcake today for lunch. And it didn't really taste "gluten-free." Baking with gluten-free flours can be a bit tricky. But, if you have the right recipe for a "gluten-free flour mix" things can go pretty smoothly.

That's about it for today!

Interesting Story

This was posted on another email list and I found it interesting. Perspective is so much! If we would've listened to the "possibilities" of Down syndrome when we were given the diagnosis after Osiyyah was born, he wouldn't be who he is today. Praise God, he's given us the wisdom, skills, knowledge & ability to let Osiyyah thrive far beyond the dark, sad "possibilites" those so called "professionals" told us that day.

 

A Story about My Two Daughters
How to Live in the World of Possibility
By Candee Basford

My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss. Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.

My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.

The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.

How? Both stories are about the same person, my daughter. The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)

The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.

The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.

The story of my two daughters represents two different worlds – the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.

The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility.

Qadoshyah

Ordering Fast Food . . . Allergen Free . . .

We don't eat fast food very often, but when we are out and about doing errands we will swing by a fast food restaurant to grab a bite to eat. And trying to avoid allergens, like cow dairy & wheat or gluten, can be challenging. And quite entertaining!

Last week we had to run a few errands and happened to stop by two fast food restaurants. One for lunch and one to grab an ice cream on our way home.

First we stopped at Long John Silver's. Bad choice right there, but didn't think about it initially. All their fish & chicken is breaded. It's probably fried in the same oil as their french fries too. We asked the cashier, as we were trying to figure out what to order,

"Do you have any chicken that's not breaded?"

Cashier: "Um . . . I'm not sure"

Me: "Or, do you have anything without wheat in it?"

Mom chimes in: "Something that's gluten free"

Cashier: "I don't know, I've never been asked that before."

Me: "That's alright, no big deal"

That was weird. I thought they would surely have some kind of allergen free food somewhere. My Mom & I decide we'll just order french fries for Osiyyah. We've done it before at other restaurants, since he really likes fries and they are (or at least should be) gluten free.

About 5 minutes later as we're almost decided on what we want to order, the cashier says "Oh, we do have naked chicken, that we can cook without any breading on it." Um, yeah, that's what we were asking for. Haha! But, by that point, we decided to just order fries.

Mistake: Don't order fries from Long John Silver's . . . I don't think they are GF, since Osiyyah spit up later on and that's the only close-to-wheat item he had eaten.

Then onto McDonald's we went to grab some Sundaes. My sister came out with the Sundaes and told me she couldn't figure out what to get for Osiyyah. I told her to get one of those fruit parfait cups without any of the whipped topping or dairy in it . . . just frozen fruit. She heads back in and deals with another cashier unfamiliar with food allergies. After several minutes and the cashier acting like she's asking for something he's never heard of and asking the manager permission to sell her a dairy free fruit parfait cup, she was able to get a fruit cup with no dairy in it.

Ahh, the joys of ordering fast food allergen free!

Qadoshyah

Where to Order Nutrivene?

In light of the other blog I did recently regarding Nutrivene & MSB Plus, and since someone asked, I thought it would give the links to where you can order Nutrivene.

For those in the United States, International Nutrition Inc. sells Nutrivene-D and the complete recommended protocol. For the direct link to order, their website is www.nutrivene.com.

For international customers, particularly those in Europe or the UK, Nutrivene-D can be ordered from the Special Health Store online at www.specialhealthstore.co.uk.

For people who are in countries other than Europe or the United States, it can be bought from either INI or SHS. But, there are also some families who have family or friends in the US order the product and then mail it to them, as it is cheaper than paying for shipping to certain countries through the company itself.

Qadoshyah

Connecting the Rainbow & Our Book

As some of you know, my mother & I published a book about Down syndrome a little over a year ago.

The book, Down Syndrome: What You CAN Do is 589 pages long. My mom & I basically edited it and compiled all the info. Lots of doctors, therapists, parents and families wrote information, articles & stories for the book. Which makes it an excellent resource. Karen Gaffney wrote the foreword. Dr. Lawrence G. Leichtman wrote the introduction. Patricia Winders gave us a physical therapy article to include. Talk Tools & Sara Rosenfeld-Johnson gave us permission to use several articles from them. Just to name a few . . . but lots of other doctors and professionals gave us their time, information & articles.

It took us awhile to compile it together, but it has been well worth it. The book is only $22.73 for a hard copy & $5 for an e-Book. Yeah, I know that is really cheap in price. But, we didn't write this book to make a fortune. We wrote this book so that it will help other families and give families hope to realize there is so much that can be done to help children with Down syndrome.

You can see a 15 page preview of the book and it can be ordered from here.

I have a question for ya'll: Would you guys like to see a hardcover version of our book? Obviously it would be more expensive, but I'm sure there are some who prefer hard cover books over soft covers.

We recently sent International Nutrition several hundred flyers about the book and they also ordered a decent amount to start to provide it on their website. Hopefully they'll have good success with it.

A little side note . . . If anyone would like flyers for their local Down syndrome associations, new parent packets or just to have to give out to whomever, let me know and I'd be glad to mail you some. Our local DS association put a flyer in each of their new parent packets.

Now, all that to bring me to this, the main reason for the post . . . Connecting The Rainbow. I've mentioned CTR before, but thought it would be good to mention it again. We sent a hard copy of our book with Shelley on her first trip to Bulgaria to give to the families there who have chosen to keep their children.

Since that trip, Shelley & CTR has been gathering resources & tools to take to the families in Bulgaria when Shelley returns to bring her son home from Eastern Europe. They have received a great response and gotten a lot of good therapy tools, other tools & resources to take to the families in Bulgaria.

Because of that, I have a stack of 21 CD's sitting here by my computer that have a PDF of our book burned onto them. I'll be mailing them out this week, Lord willing, to Shelley and she'll take them with her on her trip to Bulgaria in April.

Qadoshyah

MSB Plus & Nutrivene: Which One?

Jasmine left a comment on the post, Nutrivene-D & What We Saw. She asked some questions looking for more information and since it is a topic that comes up fairly often, I decided to answer her in a blog post.

Question:

Hi, I'm new to your blog. I was googling NTV-D and found you. My doctor just recommended this supplement for my little girl. Your report is wonderful.

I'm going back and forth between this supplement and MSB Plus V7 by NutriChem. Any other information you may have would be greatly appreciated.

The thing I like about NutriChem is that they will formulate the supplement to suit her needs according to metabolic testing.

What are your thoughts?

Thank you,

Answer:

Nutrivene does do custom formulas as well. You just have to call or write them and ask. I know they have several premade custom formulas (e.g. methyl free formula, vitamin a free formula etc) and are willing to work with families if their child has some extra nutritional needs or cannot have certain nutrients.

From everything I have researched, which is quite a lot, Nutrivene-D is far superior to MSB Plus. Yes, MSB Plus is fine and it is a good start if that is all you can get for your child. But, Nutrivene-D covers a lot more bases and excludes a few questionable ingredients that MSB Plus has in it.

I wrote an article for our book, Down Syndrome: What You CAN Do, about Nutrivene & MSB Plus. So, I'll just paste that article here, since it answers the question quite well.

Nutrivene and MSB Plus: An Overview
By Qadoshyah Fish

The two main TNI formulas available are Nutrivene-D and MSB Plus. Another different but similar formula was the Hap Caps by Dr. Jack Warner. Since Dr. Warner’s death in 2004, his formula has fallen by the way side.

Both Nutrivene-D and MSB Plus have been around for about the same amount of time. Although the idea of supplementation in Down syndrome was not new, it became well known in 1994. Nutrivene-D and MSB Plus are similar and very different, in that they are both targeted to meet the specific nutrients needs of the population with Down syndrome.

A significant difference between Nutrivene and MSB Plus is in the way they dose. Nutrivene-D doses based on weight and age, which is very reliable, but MSB Plus doses based on age alone. Dosing by age alone is not very reliable, because children’s weights can vary greatly. Dosing by weight will give a more accurate dosage and therefore prevent any possible overdosing. Of course, this is why it is important to get annual blood testing done.

Here are some examples of the difference between the dosages:

The dosage amount of TMG in Nutrivene-D for a 2 year old who weighs 30 lbs would be 150mgs. In MSB Plus, a child who is 2 years old would be 25mgs. Some children who take Nutrivene-D have to take 500mgs extra of TMG in addition to the 150mgs already in Nutrivene-D, because of the overexpression of the CBS gene.

The amount of zinc in Nutrivene-D for a 2 year old who weighs 30 lbs would be 9mgs. In MSB Plus, a child who is 2 years old the amount would be 3.75mgs. Many children who take Nutrivene-D have to take 10-25mgs extra of zinc in addition to the zinc already in Nutrivene-D, because zinc is commonly low in DS.

There are several differences in the ingredients between these two brands:

Among the differences, MSB Plus contains Iron and L-Cysteine.

The amount of Iron in MSB Plus is not very high, yet it should still not be supplemented unless the child needs it (i.e. iron levels are low or anemic). Iron can add in oxidative damage and there is already so much oxidative stress & free radicals present in Down syndrome. But, iron & ferritin levels should be monitored closely to ensure that the child is not low or anemic.

Cysteine should not be supplemented because it is in overabundance in individuals with DS already¹, due to the improper functioning of the SAM cycle.

In addition, MSB Plus has far less ingredients than Nutrivene-D. Nutrivene-D has several more ingredients than MSB Plus. The ingredients that are in Nutrivene-D, but not in MSB Plus are:

Curcumin - an anti-oxidant & anti-inflammatory
Blueberry Powder - anti-oxidant and anti-cancer
Lutein - good for eye health
Bromelain - an anti-inflammatory

These ingredients are all very beneficial and should be given to better address and help the problems commonly seen in those with DS. If given the choice, Nutrivene-D is the better formula.


1. Pogribna M, Melnyk S, Pogribny I, Chango A, Yi P, James SJ. Homocysteine metabolism in children with Down syndrome: in vitro modulation. Am J Hum Genet. 2001 Jul;69(1):88-95


Qadoshyah

Thanks!

Thanks to those of you who left comments & gave ideas and suggestions on Osiyyah's allergy testing & possible celiac disease. I read them all and will go back and look at them as we continue on the research trail of what we should do next.

We've all been laid out for the last week with a nasty head & chest cold. Since our family is so big, it takes awhile for the sickies to move through the house, unfortunately. And the Oklahoma weather has been wild, as usual . . . 70 degree temperatures on Friday and then 30 degrees with a blizzard & ice storm by Saturday. Today the 8 inches of snow is melting a lot, so hopefully that'll be the last wintery storm we have this spring.

Qadoshyah