Life On The Ranch: Warm Weather

The weather has warmed up quite a bit the past week and a half or so.

We went swimming up the creek on Sunday and it was so nice. First time this year and hopefully lots more to come. Osiyyah has been asking to go swimming for MONTHS! We keep telling him it'll be way to cold to go, so when he heard we were going swimming on Sunday, he was THRILLED!

He made quite an accomplishment on Sunday at the creek too. He has no fear of water, so we have to watch him very close. He wears a life vest too, just as extra precaution. Last year when we would try to teach him how to hold his breathe in the water, he'd open his mouth when someone held his nose plugged. But, yesterday, I was able to hold his nose and he kept his mouth shut while we let the water go up on his face (no dunking him in the water, just putting his face ever so slightly in the water). So, he finally realized what it felt like. Then he proceeded to hold his nose closed, keep his mouth closed and let me help him dip his face in the water several times. Yay! A little bit of progress, but a long ways to go before he's anywhere near being water safe. I wish we could've done the "How To Teach Your Baby To Swim" book with him (& his twin sister) when they were little. But, we weren't around water enough and didn't even know about that technique until he was older.

The evenings this time of year are so beautiful and cool though. Here's a few pictures from an evening last week . . .

...lettuce time for the bunnies, since we have so much extra in the garden...

...then we went towards the garden for a bit to see what was going on there ...

...we then took a little walk down to the pond for a few minutes...

...and of course had to throw rocks in it!...

Goodnight!

Recipe 2: Gluten Free Strawberry Shortcake

Here is our staple strawberry shortcake recipe. We used this recipe before going gluten free and have been able to adjust it to gluten free quite easily :).

Gluten Free Strawberry Shortcake
Click here for a printer-friendly version of the recipe.

Yield: one 9"x13" pan.

4 cups Rice Flour*
2 teaspoons Xanthan Gum
1 cup Sugar
6 teaspoons Baking Powder
1 teaspoon Salt
1 cup Butter or Shortening
1 1/2 cup Milk
4 Eggs

1. Heat oven to 375 degrees.

2. Combine flour, sugar, baking powder and salt; mix well. Using a fork cut in the butter or shortening, until mixture resembles coarse crumbs. Add milk and eggs, stirring until all ingredients are moistened. Pour into pan.

3. Bake at 375 degrees for 25-30 minutes or until toothpick in center comes out clean. The cake should have a golden brown color to it.

*Just rice flour can be used. But to give it an even yummier flavor, use 1/2 cup sorghum flour for every 4 cups of flour (e.g. 3 1/2 cups rice flour, 1/2 cup sorghum flour).

For the strawberry sauce, we don't have an exact recipe we follow.

We put all the strawberries (for us it is a large amount - typically about a gallon or more) in a pot. Pour in 1/2 - 1 cup white sugar. Fill the pot with water until it has enough in it to make a decent amount of sauce (again this all depends on how many people you are serving and if you want any leftovers). Pour in a small amount of cornstarch mixed with water to help thicken it. Cook it over the stove until the sauce is warm and to desirable thickness and temperature.

Enjoy!

Writing for Speech

As I think I've mentioned before, Osiyyah does a lot of what therapists call "backwards-chaining." This is where the child will say the word backwords, like "pu" for "up", or "ffa" for "off", etc. He doesn't do it with every word, but he does it with a lot of words, especially new words he is learning. Osiyyah's classic "backwards" word is "Oops." He says "Suhoo." It is pretty cute ;).

So, at speech last week, the therapist wrote one word ("Off") that she was working on with him on a piece of paper, had him sound it all out and then say it. And guess what, he said it correctly! Yes, it worked. Right then a light bulb turned on in my head.

I remember reading about how kids with Speech Apraxia are taught and one of those is by writing words, letters and sounds out. Now, don't get me wrong, we do not know if Osiyyah has Apraxia or not. But, the concept of writing a word out for him to say it was just something I completely forgot about!

Knowing that Osiyyah is very visually oriented. And knowing that he responds so well to anything visual, especially when it comes to speech. PROMPT, Cued Speech, etcetera, it's a no brainer that writing a word out to sound it out will help him!

So, this has been added to our speech regiment :).

Writing out whatever word we feel is good to work on. And consistently repeating it. Right now there are 8 words I have written out. As he gets it down, we'll take it out of the routine. And as other words come up, we'll add them in. That's why "Horse" is in there. Osiyyah asked to say "Horse." And "Mom" is there because . . . well I'll explain that in a minute.

Some of the words I have written down he knows how to say, but I thought the opportunity would be good to teach him what the word and letters for that word look like. He's been enjoying it!

My 14 year old brother has an English Shepherd puppy who is named "Molly." Osiyyah calls her "Bolly." Yes, it can be kind of cute to hear him say that, but . . . it'd be nice to hear him actually say "Molly." And this is the tricky part that has me kind of perplexed . . . he can say "Mom", he can say "Mama", but when it comes to "Molly", he can't. They all have the same sound when it comes to the front of the word  . . . "Mah."

So, I had written "Molly" written out so that he could learn how to say it wright. Sounding out "Mmmmmaaaaaa" comes out as "mmmmmmbbbbaaaa" with Osiyyah. He adds an extra "B" sound in there before the "aaaa" sound. I've been doing the PROMPT commands with him and they help about half of the time for this instance. It's so hard to get him to drop that "B" sound when transitioning from "mmmm" to "aahh."

I wrote out "Mom" because he knows that word perfectly. I thought maybe if he visually sees that the words look similar, it'll help him. It hasn't yet, but we've only done it two days. So, we'll keep it up and see if it helps him or not. I think that it will, especially when it is combined with PROMPT.

His motor planning difficulties can certainly be perplexing. But, I know persistence and hard work will pay off. God has already blessed him tremendously and he has made such great strides in his speech.

Speaking of great strides . . . he is finally able to say "Me"! Yes, it's a huge achievement. No, he's not used to using it in every day language. So, when he is talking and saying "Dee Da Barn" ("Me want to go to Da's barn" - "Da" is what he calls me), he'll stop himself and say "Me Da Barn" or "Osiyyah Da Barn." It's very cute to hear him say "Me Barn?" and he knows we all enjoy it, since we always get excited when he says it :).

So, thought I'd share just one more idea we're using with Osiyyah. And it does work. I've seen it first hand. We'll continue using it with all the words we're working on and Lord willing it'll continue to pay off.

Longvida Discount!

Phytosensia is giving a $5 holiday discount from today until 11:59pm on Monday, May 31st. Phytosensia is one of the online places that carries Longvida Curcumin.

Go here to see all the details.

A bit of Change

I decided to play around with the blog coding a little and change it up a bit more. I had too many widgets/information to have just a two column blog, so I upgraded to a three column. There may be a few small changes here and there over the next few days, so don't be alarmed :)!

Living Gluten Free & Recipe 1

Well, our family's life has changed quite a bit since we've discovered the Gluten Intolerance with Osiyyah. Slowly several of the other kids in my family decided to cut wheat/gluten out of their diets to see if they would feel any better. And sure enough, it's solved a lot of problems! So, since over half the family seems to have some kind of gluten sensitivity or intolerance, we've just decided to all go gluten free. It'll make life much easier, that way we don't have to cook separate meals all the time.

The guys all seem to enjoy the change with the food. I've heard multiple times, "Ever since we went Gluten Free the food is so much better." Haha! It's because we're making everything from scratch now.  My 17 year-old brother is extremely sensitive to gluten (even the smallest amounts), so we've had to cut out a ton of stuff. Even foods that say "processed in a facility that processes wheat."

So, we've been back to making mayonnaise from scratch, making all salad dressings from scratch, making dishes with potatoes (baked, fried, mashed, etc) and rice (different flavors and uses), eating more salad (which is a must because we have TONS of lettuce from our garden :)), using the crock pots a lot more, eating more meat, etc.

Although the above may sound daunting to some, it really has not been too difficult to adjust to. We have continued to make all kinds of baked goods as well (cookies, biscuits, cakes, etc) and they have all turned out fabulous. We've come to realize that living gluten free isn't too tough after all :).

There's a variety of gluten free flours that can be used. The flours we mainly use are white rice flour, brown rice flour, sorghum flour and potatoe starch. I hope to experiment some with tapioca flour and millet flour at some point here too. Garbanzo bean flour can be used too and amazingly it doesn't give things a "beany" flavor at all.

Sourghum flour is really good and really strong. You only need a small amount in a recipe to get the rich, sweet flavor of Sorghum. I used one cup sorghum flour in a recipe that had 8 cups of flour and you could still taste the Sorghum. Yummy :).

Brown and white rice flours are what we typically use as the base flours of a recipe. Potatoe starch helps with texture in recipes, because it's very smooth. You only have to use about 2 tablespoons potatoe starch to 1 cup of rice flour and the texture of whatever you make will be very smooth. Some may not notice a texture difference, but if you pay close enough attention it can be noticed.

Xanthan Gum is also very important to baked goods.  You don't have to use very much per recipe. 1/4-1/2 teaspoon per cup of flour.

I'll try to post a recipe here and there of gluten free foods that we use regularly. First up will be gluten free biscuits. They are so yummy and almost better than the gluten-filled version :).

Gluten-Free Baking Powder Biscuits
Click here for a printer-friendly version of the recipe.

Yield: 14 Biscuits

2 cups gluten free flour mix (see below)

3 teaspoons baking powder

½ teaspoon salt

½ cup shortening (or butter or lard, depending on what you prefer ;))

¾-1 cup milk (normally 1 cup is what will make it the right consistency)


(Gluten free self rising flour mix:

4 tablespoons Potato Starch

Enough white rice flour to make it up to 2 cups

1 teaspoon baking soda

1 teaspoon cream of tartar

2 teaspoons Xanthan Gum )

1.       Heat oven to 450 Degrees. In a large bowl, combine flour, baking powder and salt; mix well. With fork, cut in shortening until mixture resembles coarse crumbs. Stirring with fork, add enough milk until dough leaves the sides of the bowl and forms a soft, moist dough.

2.       Roll into small balls, then flatten to about ½” thickness. The biscuit should be about 4” in diameter.

3.       Bake at 450 for 8-12 minutes or until golden brown.

*The potato starch is vital to the flour mix. If you only use rice flour (mixture of brown & white or just white), the texture of the biscuits will be a bit grainy. The potato starch helps keep them smooth with a nice texture.*

Broken Record

Sometimes I feel like I may sound like a broken record, especially when it comes to the plight of the orphans around the world. But, it is something that is very important to me and I will keep talking about.

When my grandparents were here, my grandma was sharing some stories from her childhood. She had a brother who had mental retardation due to something that happened at birth. Back when he was born in the 1930's, America had mental institutions. And it was looked down upon to raise a child like him. Just like it is still in other countries around the world. My grandma's family had a bad stigma around them because her parents raised her brother.

Her mother was encouraged to put him in an institution type of thing when he was an early teen because they would teach him school and he would supposedly do well. Yeah right. She put him in there for a little bit, but hated it. And then ended up bringing him home because he wasn't being taught . . . it was a mental institution.

When my grandmother was telling us this, I couldn't help but think of the orphans who still live the plight of a mental institution and orphanage, even to this day. Yeah, America may not do it anymore and we have come a long ways in that regard, but loads of other countries still do it.

America has just changed what is done with children who have disabilities, namely Trisomies. Instead of putting these children into orphanages or institutions, they are murdered (aborted) 90% of the time a prenatal diagnosis is found.  Because many people still are scared of a child who has a disability. And reject the fact, that God is the one who made them with an extra chromosome. There's nothing that the child could do about it anyway!

Instead of being put into a horrible place to live, where there is hardly any love, where they are starved of proper nutrition and adequate food, and basically die a slow death, they are killed as soon as the diagnosis is found out. Except for the 10% of families who choose to keep their baby after they are given the diagnosis.

So, in these other countries around the world, like many Eastern European countries, you can see the children starved and you can see them dieing a slow death until they are rescued through adoption.

This is the reality of the orphanages in many countries:

How old would you say this little girl is? A year old? Give or take a little.

No, she just turned 5 years old. Yes, you read that right . . . F-I-V-E years old. And she weighs 15 lbs. Her family just adopted her and was able to take her out of the orphanage for good this past week. Just in the nick of time before she would be transferred to a mental institution where she would've very likely died quickly. She will now know the love of a family, instead of her small world of living in a crib.

Life On The Ranch: Strawberry Shortcake

Wow, time sure flies fast! It's been almost 10 days since my last post. That wasn't my intention, but time seems to get away from me :).

I have another post written up and hopefully will get that up in the next day or two. And I have another topic in mind too (how we've gone gluten free! Exciting times :))! But, for now I'll do a short little post & story . . .

We were given a few gallons of fresh home-grown strawberries the other day. 3 gallons doesn't last long in this family. The gallon I froze barely survived 2 days :). And that's only because we decided to make Strawberry Shortcake and so everyone was told to stop eating the frozen strawberries!

Sunday night we made Gluten-Free Strawberry Shortcake. We were low on GF flours, so I had to use a combo of white rice flour, sorghum flour and garbanzo bean flour in the shortcake. I was nervous how the garbanzo bean flour would make the cake taste, but it didn't seem to alter the flavor at all. That was probably at least partly due to the bit of sorghum flour in the cake, since that flour is so sweet and strong in flavor. The cake turned out delicious. If anyone would like the recipe, I'd be happy to post it up here.

Osiyyah was thrilled to help make the strawberry sauce. So, he did the majority of the stirring of the sauce.

Strawberry sauce

Osiyyah stirring the sauce

And the yummy GF shortcake

Cooking & Baking gluten free hasn't been too challenging. It just takes some readjusting and rethinking, but it's not too complicated really.

TalkTools And Opposition From Therapists

Karien left a comment on the this post. I thought I would reply to her with another post, in case others would find it of interest.

"I just love updates on "O's speech. My son Kallen is at a very similar stage- leaving out certain letters at the beginning and very often on at the end of words, but most of the time he can say those sounds individually. He struggles with the"k" and "g" but we pronounce the "g" , I think like you would say it in the word "aaaarg". I suppose the bite blocks are from talk tools? I just love your detailed descriptions- there is so much different opinions around here, and many therapists ( all we know) doesn't really buy into the talk tools thing- therefore we struggle to have assess to it and learn how to use it!
He does get the "k" right if we press his tongue down and he is more aware of that now, but still pronounce it as a "T""

Yes, the bite blocks we use are from TalkTools.

I know many therapists, even here in the states, do not agree with TalkTools and Sara Rosenfeld-Johnson's techniques. And it is very unfortunate. In my opinion, it's also a very closed mind and ignoring what should be an obvious fact & truth.

Why should it be so obvious? When you look at the whole picture of children with Down syndrome one of the "characteristics" of the syndrome is hypotonia, or low muscle tone. That low muscle tone is everywhere. Why do so many do PT? To help facilitate proper muscle tone. How about OT? To help facilitate proper use of fine motor skills because of the challenges low muscle tone can cause. All the therapies are also to help the child's general development and brain development by challenging the body to work more than what it may want to do.

The low muscle tone doesn't stop at the jaw line. There are muscles all over the face (duh!). If those muscles have low tone, which can easily be seen, then why would you only work on making the child say the sound? If the child's tone is so low, how could you expect him to say a sound? By doing superficial therapies? Therapies that superficially help the child say a sound, but in reality the child's mouth muscles aren't up to where they should be to truly say that sound?

You can see the low tone in that a lot of children with DS hold their mouths slightly open and their tongue slightly out. Why is that? Not because their tongue is too big, but because their muscles aren't strong enough to keep their jaw together and their tongue retracted.

I've seen therapists who just do the superficial therapies. Like making the child lay down on the floor, so that their tongue automatically falls back in their mouth/throat. Then they make the child say a certain sound, particularly the "K" (hard C) and "G" (Guh) sound. Those sounds are produced at the back of the throat/back of the tongue and then the child might be able to say those sounds since their tongue has just "fallen into place" by gravity. I know some therapists may use this to just show the child where the sound is coming from, if they can't figure out where to make that sound come from. If that is the case, I guess it's not as bad. I suppose it might be helpful for some children.

I've seen oral motor (placement) therapy work for Osiyyah. I've seen progress. His jaw went from not being able to bite a single bite block to now being able to hold #4 for 20 seconds per side per time. His speech has improved because of this. No one's gonna tell me oral motor/placement therapy doesn't work.

If you read the books, they make so much sense. Especially if you read the books and have a child with slow speech in your life. When you see your child (or sibling ;)) fit almost everything you read, the lightbulb really turns on.

Karien and any others who's therapists are skeptical about TalkTools, I'd suggest buying them the books or a DVD set and giving it to them and having them watch/read them. Or putting on a presentation with other families or a DSA. TalkTools & the therapists who did the DVD sets and wrote the books give tons of information and explanations as to why and how OPT works.

I did a blog post a few months ago on what resources I'd recommend from TalkTools. But, to keep things simple, the DVD set I'd recommend is Lori Overland's Down Syndrome Population DVD series. And the two books I'd recommend are Sara Rosenfeld-Johnson's Oral Placement Therapy book and her Jaw book.Of course, anyone who's been reading this blog for any length of time, knows how highly I recommend the Jaw book. It has been *key* to Osiyyah's speech and language progress.

I will try to get one of my sisters or mom to take pictures when I do Osiyyah's speech therapy with him next. That way you can see some of the PROMPT commands we do for some of those hard sounds (like K & G).

Life On The Ranch: Time to Chill

The last week and a half has been usually busy here for us. My grandparents from out of town stayed here in their 5th wheel and we had a great time. So, we were hanging out with them a lot and haven't done too much else.

They left today, so it was time to catch-up on things that haven't been done the last week and just chill . . . since we were all tired from our early morning breakfast extravaganza with them :).

It was a very warm spring day today, so we spent quite a bit of time outside . . .

First stop for Osiyyah & I was the bunny barn. A couple of his sisters joined us too. For a little while, O held the kittens & played with the doe I'd let run around in the pen, then he heard mom was out in the garden, so he asked "Dee, Mom?" ("Can I go to Mom?") and so off he went to help her.

Here are a few pictures from our day . . .

...Osiyyah playing with "Carissa"...

...Yophiyyah (O's twin sister) being the "baby holder." She always likes to hold the little babies :). The baby she's holding here is 4 weeks old...

...A couple pictures of the start of our garden. We've been eating lettuce off of it for a couple weeks now. Yummy!...

...And a picture of a bit of the pasture & pond on our property, so green again finally!....

Goodnight!

A Mission of Hope

I thought I'd share the article I wrote for our local DSA's monthly newsletter. I can write an article for their newsletter whenever I want, so if anyone has any other ideas for topics, let me know :).

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A Mission of Hope, Truth & Acceptance

My little brother, Osiyyah came into our lives 5 years ago. The day he & his twin sister were born, our lives have been forever changed because of him and the extra chromosome he sports, but it has all been for the better. It has been a huge blessing that God put him into our life.

When he was born, the information and “help” we were offered was so dark & gloomy. It was all this stuff he “wouldn’t” do or how hard our life would be with him. This was in 2005 and as we quickly found out, there is so much that can be done to help children with Down syndrome achieve their highest potential. You would think that we would have been offered all the powerful, helpful resources that are available here in the United States and the potential children with Down syndrome have. Instead of such a dark, “I’m sorry you have a baby with Down syndrome . . . and these are all the things he won’t be able to do.”

Because of this, my mother and I purposed to write a book about Down syndrome at some point to be able to give to families so that they would have access to all the helpful information a lot sooner than we ever did. And so, in the fall of 2008, our book was finished. And appropriately titled, Down Syndrome: What You CAN Do. We edited the book and had resources from all kinds of doctors, therapists, professionals and families put into the book. The introduction was written by Dr. Lawrence Leichtman. The foreword was written by Karen Gaffney. Many other well known therapists, such as Pat Winders and Sara Rosenfeld-Johnson (Talk Tools) also contributed. The book ended up being 589 pages long and full of resources that we wish we would’ve had access to in those first few months after Osiyyah’s birth.

In the United States, families who have a child born with Down syndrome or those who decide to keep their child with Down syndrome because of a prenatal diagnosis, often times hear a very sad, unhopeful picture from their doctor, social worker or whoever the “professional” might be. I have read the stories of those who didn’t get a sad picture when they were given the diagnosis. But, that is not the majority. This same thing happens in European countries, but it’s far worse.

In European countries, nobody knows the multitude of options that are present in today’s society. And so because the government supposedly “knows better”, the majority of these parents leave their infants to live in a orphanages and mental institutions.  Most children are in an orphanage until 4-5 years old and then transferred to a mental institution, where the death rate is very high.

These babies & children are tied to cribs or strapped down for hours or even days on end. They are starved of love, adequate care & proper nutrition. Not routinely given baths and treated with hardly any compassion. All because of a special need or extra chromosome they might have. How sad & sickening is that?!

As an example, one family who recently adopted their daughter with Cerebral Palsy from the Ukraine wrote on their blog (http://stumbofamilyadoption.blogspot.com),

"So we asked Nina today about her life at the orphanage, not sure if she understands us, not sure if she knows how to communicate with us.

‘Nina?’ I asked, ‘Were you tied down on your crib? Did you have to lie down and they would tie you?’ She looked at me, a sad expression, her little lip came out, and the tears started to come, she said softly, ‘yes.’ And she cried some more. I held her so close to me, wishing I could take that away from her, wishing that somehow she had not had to go through that. Andy asked her why they did that. ‘Nina naughty, Nina naughty.’ She responded.”

Because of this and the need for proper education and information in these countries, a new off-shoot of Reece’s Rainbow Adoption Ministry called Connecting The Rainbow (CTR) was formed. CTR is a volunteer group that gathers therapy tool donations, book resources and any other helpful material to deliver to the few families who have decided to keep & raise their children with Down syndrome in these European countries.

CTR just took their first trip the beginning of April and brought the 250+lbs of donated items to families in Bulgaria.  The small support group in Bulgaria includes 36 children with DS ranging in age from 6 months to 13 years old. These families are going against the grain in their country so much and can use all the help and resources they are given.

We donated a hard copy of one of our books to CTR on Shelley’s first trip to Bulgaria in December. Shelley just completed the adoption of her family’s 3^rd child with Down syndrome from Bulgaria. A 7 year old boy from a mental institution. On Shelley’s last trip to Bulgaria in April that included her bringing her son home and the CTR mission trip, we sent 21 CD’s with copies of our book on it to the families in the support group.

Shelley & Leah (CTR) were also able meet with some officials in Serbia in the hopes that a flow of helpful information can be brought there as well. Hopefully the “trend” of orphanages & mental institutions can be stopped. CTR is also working to try to establish connections in Ukraine & Russia. It is all a work in progress and will take a long time. But every family who decides to raise their child with Down syndrome is one less child in the statistic of 147 million orphans worldwide and one less child who will see the abuse & neglect of an orphanage or institution.

Down Syndrome: What You CAN Do can be purchased from http://stores.lulu.com/gotdownsyndrome. A hard copy of the book is $22.73 plus shipping and an e-Book is $5. The book is priced so low because we want it affordable for anyone to get. We did not write a book to make money, we wrote a book to help families.

To see what you can do with Connecting The Rainbow check out their website at www.connectingtherainbow.com. To find out more about internationally adopting children with Down syndrome you can visit Reece’s Rainbow at www.reecesrainbow.com.

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