This is a great review! We were just told by our speech therapy to look into getting these to help Ryder keep his tongue in his mouth. I'd love to win these so I don't have to purchase them. :). We are also working on self-feeding and dressing and jumping and running.
Chriss, please email me your name and address to thechroniclesofelliebelliebear@yahoo.com and I will have ARK Therapeutics send you the Lip Bloks ASAP.
Please remember that you can receive 10%-off the entire ARK Therapeutics store until June 15, 2014 by using coupon code ELLIEBEAR10.
When Ellie Bear was transitioning off of a bottle, we [we being the collective of myself, Andrew, and therapists] immediately implemented the straw cup. Our thoughts were "most places have straws, but none have sippy cups". Ellie started to drink rather quickly from a straw which was really quite impressive given the fact that most children Down syndrome have low muscle tone or hypotonia. This means that the muscles of her tongue, lips, cheeks, and jaw muscles have low tone and difficulty coordinating.
Until recently, I never really paid attention to how she drank from her straw cup. Ellie was inhaling the entire straw. Not only that, she was not achieving lip closure, which is very important for not only drinking but also for speech sound production! Rather than pursing her upper and lower lips around the straw, she was using her tongue as a base; a substitute for her lower lip. This meant the straw was going into her mouth more than 3/4 inch! Ellie also likes to bite the straw which can be quite a pain as it cracks both the cheap restaurant straws and the thicker plastic straws. Girlfriend has quite the bite! Ellie is also unable to obtain proper lip closure around those narrow, tiny straws that you see with juice boxes and Capri Suns (think coffee-stirrer-type straws). Her tongue would protrude and the juice would dribble down her chin and all over her clothes.
It is difficult to see but her tongue is supporting the straw.
The straw is also pretty far into her mouth.
For the past month, we started implementing the Lip Blok through ARK Therapeutics. This company provides a wide variety of sensory and feeding materials for children. Yes, chewy tubes! The bear cup! Various feeding spoons! Here is where I tell you: I was contacted by ARK Therapeutics to write a review on one of their products. Knowing that Ellie needed help drinking from a straw, I chose the One-Way Straw with Lip Blok Kit. While I am not being paid monetarily to write this post, I did receive the Straw Lip Blok Kit for free to write a review on it. The opinions in this post are entirely my own.
At this point, you are probably wondering what a Lip Blok is. It is this:
Essentially lovely thing prevents the child from pulling the straw too far into the mouth. It encourages the rounded lip closure using the bottom and upper lip. It discourages tongue thrusting by forcing the tongue to retract back into the mouth/oral cavity. It also prevents the dreaded straw biting and thus straw cracking/breakage. It is advised to start at 3/4-inch and then decrease to 1/2-inch and further to 1/4-inch.
The kit also came with 3 straws that have a one-way valve and clips. Ellie was adamant that we use the yellow straw because yellow is awesome by Bear standards.
During speech therapy, we placed the straw into Ellie's mouth and marked where her lips were hitting the straw. It measured at ~ 3/4 inches, which was the size of our Lip Blok. We inserted Lip Blok into the straw and let her get used to it. Now that she has gotten the hang of it, we have swapped it out for the 1/2-inch Lip Blok. This requires Ellie to work a little harder at getting her tongue, lips, and cheeks into the correct position for drinking. She is fighting me a bit, but it is slowly getting easier for her. After she masters the 1/2-inch, we will then move on to the 1/4-inch Lip Blok.
My Review of the ARK Therapeutic 3-Straw Clip with Lip Blok Kit
Pros:
The straws have little clips on the side of them so that you can clip it to an open cup. This prevents the straw from slip-sliding around.
The Lip Blok is BPA-free, Lead-free, phthalates-free, and PVC-free
The Lip Blok is also latex-free which is a big deal for me since I have a latex allergy.
The Lip Blok very easy to toss into my purse or the diaper bag. It is nice to not have to lug a cup around.
The Lip Blok fits into regular straws that you find at restaurants--just insert the long end into the straw.
The Lip Blok also fits swirly straws--slide the long end of the Lip Blok over the swirly straw.
The Lip Blok is also dishwasher safe. . . did you hear me? Dishwashers safe!
ALL the products by ARK Therapeutics are easy on the wallet. Honestly, wish I found them earlier when I was scavenging for chewy tubes. I would have saved myself a pretty penny!
ARK Therapeutics has great customer service. See below.
Cons:
This is not actually about the product, but the way the directions and website are worded. I requested the ARK's One-Way Straw Clip Assembly. The description says:
ARK's Straw Clip helps manage difficult situations by holding the straw securely to the cup. Assembly includes: 3 one-way straws with a built-in valve, 3 Straw Clips, and 1 Lip Blok™. Colors may vary.
I received the 3 straws with clips and the 1 Lip Blok. When I read the directions, they said that I could trim the Lip Blok using a scissors. It even showed a pictorial diagram of the scissors trimming the Lip Blok. I thought that was pretty doubtful as the Lip Blok I received was really firm. The directions discussed starting off at 3/4 inches then trimming to 1/2 inch and eventually ending up at 1/4 inch. Needless to say, I was unable to trim the Lip Blok and partially massacred it in the process.
Apparently, there are various types of Lip Bloks offered from ARK Therapeutics--flexible Lip Bloks and firm Lip Bloks. The Flexible Bloks can be trimmed. The Firm ones, cannot. This did not seem very clear to me. The customer service reps at ARK Therapeutics explained this to me and were kind enough to send me Lip Blok 3-sized Hierarchy Kit. They arrived very promptly in the mail and I was able to start Ellie on the 1/2-inch Lip Blok immediately.
Therefore, if you decide to purchase any of the Lip Bloks or kits that include Lip Bloks, read very carefully and do not hesitate to contact customer services with questions.
She actually doesn't need my help holding the cup or the straw. . .
I am just trying to prevent her from dumping the water out.
ARK Therapeutics is offering Ellie Bear's readers a 10% off all products through June 15, 2014. Be sure to enter coupon code ELLIEBEAR10 at the check out to get your 10% off!
Additionally, they are sponsoring a giveaway this week for the Every Lip Blok Combo which includes 3 sizes of Lip Bloks [1/4, 1/2, 3/4-inch] plus two flexible Lip Bloks that can be trimmed to any length [see link below for details about the product]. To enter, please answer in the comments below "What are the therapy goals are you and your child working on this summer? The give away ends at Midnight CST on Sunday May 11, 2014. http://www.arktherapeutic.com/ELBL100AR.html
These look great! If we won, ruder would like the blue circle with a 20" colored necklace. Maybe this will help to save his poor little thumb he insists on gnawing raw.
Chriss, please send me your mailing address to
thechroniclesofelliebelliebear@yahoo.com
so that Ryder can receive his blue circle chewelry necklace.
The above picture may not look exciting to many of you, but to me, it is a symbol of how far my Ellie has come. Two months ago, the above would not have happened. Two months ago, I would not have strayed far enough from my daughter to take a picture of her while playing with chalk. I would have sat right with her, practically on top of her, ready to whisk that chalk away before she devoured an entire piece. Or box. of chalk.
"Why this blue positively makes my eyes 'pop'!"
Pink and blue, her personal favorites.
It isn't just the chalk. Ellie's consumption of non-edible items extend to crayons, paper, the tips of colored pencils, and markers. Yes, markers and by that, I mean the tip as well as biting through the plastic. All of our board books display teeth imprints. Most of Ellie's clothing has little holes along the collars from where her pointy teeth have poked through. Then there is the mouthing. The mouthing of blocks, Little People toys, balls, balloons (dangerous!), and any toy in general.
Ellie has sensory processing disorder mainly with oral seeking tendencies. Everyone has some sensory issues, but Ellie's affect her ability to function as a little girl--she has trouble playing and she has difficulty interacting with friends. I have frequently heard "Ellie ate my chalk!" and "Ellie, we don't want to play with you because you chew our toys". As a mama bear, I want to cry. I want to shelter her and place her in a protective bubble. I want to yell at the kids even though they are correct-she does eat their chalk and toys. However, I know that none of that will solve anything. Ellie needs to have her oral cravings satisfied, but not at the expense of her social life.
I was recently contacted by KidCompanions Chewelry to see if one of their products would help Ellie and her intense mouthing, chewing, and gnawing. They graciously sent one of their necklaces for Ellie to try. I was a bit skeptical. Would Ellie actually wear this thing around her neck? Would she actually chew it?
Go back and look at the top photo--Yes, Ellie is actually wearing her KidCompanion necklace AND she is not eating chalk. She is. . . drawing with it!
I am going to state the obvious here: it is a necklace! As in worn around the neck. As in my daughter can attempt to throw it and it is still there. She can keep it in her mouth and still use both of her hands to manipulate toys or torment the dog. When she lets it drop out of her mouth, it is still there. What all of this means is: it does not get lost! (they also have clip-on options as well, but Ellie is a fashionista and needed the necklace)
It is safe. It has a break-away type clasp in the back. If Ellie decides to yank on it or it happens to get caught on a piece of play equipment or a jealous child tries to steal it, the necklace clasp opens and does not choke my beautiful little girl
It is latex-free. Since I am allergic to latex and I have to handle this necklace, this is a big pro. It is also free from lead, BPA, PVC, and Phthalates.
Is is top-rack dishwasher safe. I love that. The Chunky Chicken is a rough and tumble kind of girl. She plays in the sand, mud, puddles (when Texas actually gets rain), paint, and mulch. Sometimes, some warm soap and water just doesn't cut it.
The pendant is extremely durable. Ellie bites and when she does, it is HARD. This thing has stood up to some serious gnawing and biting. Plus, this mama bear no longer has beautiful bruises of various colors decorating her arms and Ellie Bear no longer has red, excoriated sores on her thumbs from gnawing.
Ellie is not a big fidgeter (she is more of a climber), but I am. I am always grabbing my earring or rubbing my fingers along my necklace. I am someone who needs to keep my hands busy. This pendant has a little dot in the middle (Ellie's is red) that is a different texture. It is perfect for rubbing your fingers over.
Here is what Ellie likes:
It is pink and red. Her two favorite colors. . .she got to pick her colors.
Circle vs. Heart
Color choices: white, black, pink, yellow, green, blue
Lanyards--length of 18" or 20, hand-dyed or undyed organic cotton
If Ellie had her choice, she would own all of them because this girl likes to accessorize
She can chew on it and not get into trouble
She can have it in her mouth and still use her hands
She can wedge it relatively far into her mouth to get the molars and not choke or gag
She thinks she is hot stuff wearing a necklace.
"Look Ma at my stunning new necklace! I feel pretty oh so pretty!"
KidCompanions has offered to give away one of their Chewelry necklaces or clip ons to a The Chronicles of Ellie Bellie Bear reader. To enter, you must be a resident of the United States or Canada. Please leave a comment to this post that includes the necklace you would like if you win--heart/circle, color, length of lanyard, dyed or undyed. Winner will be drawn at random on Saturday March 30, 2013.
*In writing this post, my daughter Ellie received a free Chewelry necklace from KidCompanions for her review. The views and opinions stated in this post are entirely of my own.*
Lately, I have been joking about Ellie's recent weight gain, thus happily reinstating the "Chunky Chicken" nickname that she earned when she was a wee, chubby baby with rolls.
My little girl has never needed to worry about food. She always knows that she will get to eat and mostly likely will have a few choices of what to eat. She never had boiling hot, watered-down gruel shoved down her throat via a bottle with the nipple cut off. She never had spilling out of her mouth, soiling her clothing because she couldn't swallow fast enough or because she was not receiving reflux medications.
Ellie is 3 years-old and weighs 28 lbs.
Many children in Eastern Europe, residing in orphanages or institutions are severely malnourished and underweight. Many children who are adopted from these regions are brought home weighing half of what Ellie weighs. Some of these children are so malnourished that they are immediately admitted to the hospital as soon as their plane touches U.S. soil.
Throughout this blog, I have shared adorable photographs of the Princess Ellie demonstrating her rocking climbing skills and playing with her blocks, baby doll, stuffed puppy, books, or plastic utensils. She has been given ample opportunities to explore her environment all while knowing that her mommy is near by to shower her with love and praise. Myself and various therapists have worked with Ellie to help her develop her gross and fine motor skills. Thus enabling her to navigate her world.
How can a child learn to sit up, crawl or even walk if he is left in a crib or tethered to a chair? How can she learn to feed herself, turn the pages or a book, or even build a block tower if she does not have access to toys?
Many children with Down syndrome, cerebral palsy, Apert's syndrome, or other "defects" are deemed unworthy of life and are placed in institutions throughout Eastern Europe. Their parents are advised that this is "what's best for them". Yes, it does sound a bit like us 30 years ago. Sadly, these orphanages and institutions are not healthy environments. Their may be overcrowding. The staff uncaring or overworked. Supplies are scarce. Diapers may be reused. As in the disposable kind. The children are often left for hours on end in their cribs. They do not have much human interaction. No love. No one to read to them. No one to hold them. No one to cheer them.
These children are not forgotten. Not by me and not by many of my dear friends.
Jane, my fellow UK blogging buddy, is very adamant that my hair will be a glorious color of the rainbow by Christmas. Our goal of $3,000 for Bobby is nearly halfway met. In fact, Jane was just in Kalinovka--the remote institution where our Bobby lives. The location where the Happy Child Fund is constructing the 2nd House That Love Built. FORGET ME NOT!
The Forget Me Not has its own Blogger Platform now. Jane has spearheaded it and would like the word to get out as she is having a rather difficult time gaining followers and thus spreading awareness about these children. Please head on over to the Forget Me Nots and click that little "share" button. http://flightplatform.blogspot.com
Even if it is not possible to donate (believe me funds are tight!) or you are loathe to see me with an unnatural hair color, share share share. Perhaps one person will see Bobby and KNOW that he is her/his son. Perhaps another person, perhaps with a rather large checkbook, would be moved. Or, even if you have just $1.00. If every follower on this blog were to donate $1.00, our Bobby's fund would grow by nearly $200. Jane has huge giveaway going on right now over of the Forget Me Not so be sure to check it out.
Maggie. Darling Maggie is a little girl who is just one month younger than my Ellie. That's right, she just turned 3 years-old and has spent 3 years without a family. She has cerebral palsy and desperately needs a home. Early intervention and love would help little Maggie thrive. This little girl has been so heavy on Christie's heart. So very heavy that doesn't know what to do to help her. Christie has been selling Scentsy product like there is no tomorrow with a pledge to donate all of her earnings to Maggie's fun. If you want more information on her Scentsy sale, please contact me.
Finally, I cannot end this post without showing you my Tabitha and Elden.
ANNOUNCING: Tabitha has a family!!!!! I do not know any details yet, but it just recently happened. Her photographed has been moved to the My Family Found Me Page!!!!!!
Every week, every day, I think of her. I wonder, is she warm enough? Did she get enough to eat? Does anyone hold her? Sing to her? Tell her that they love her?
She is beautiful, sweet, and precious. Yet, she has no home. No family. In less than 2 years, she will most likely be transferred to a mental institution.
I pray daily that her forever family will find her. I have no doubt that they will. After all, how can a person's heart not melt when they see her face?
My dear, darling Tabitha, I will never stop advocating for you.
Finally, does anyone remember this sweet little girl? It is Albina! A Perfect Lily is doing a huge give away to help her forever family, the Jolly's, bring her home. They are really struggling with fundraising and could use our help. Details can be found here. Hurry because the give away ends on Saturday 3/31.
Albina
Forget-Me-Not Friday is a blog host sponsored by Jane at Flight Platform Living with the goal of bringing about awareness of orphans with special needs in Eastern Europe. To learn more about why this is such a cause close to my heart, please click here.
For those of you who asked, the book that Ellie is "reading" is DK's Flaptastic Colors. There are many in the series, but Ellie loves the shapes and the colors ones the best. Ellie tries to sign and say the colors on each page.
Seven Snippets Friday is an awesome blog hop hosted by my dear blogger buddy Andi at Bringing the Sunshine. Today's photos are brought to you by Instagram (because I was too lazy to lug my fancy camera around).
1)
Ellie, the Farmer in the Dell
I used to write research papers. Tons of research papers. In nursing school, we would write care plans, more care plans, research papers, and more care plans. I even composed a fabulous thesis on the "Psychosocial Impact on Siblings of Children with Cancer". It was riveting. It was kind of thing you would want to read before bed because it was not only uplifting, but it guaranteed to put you to sleep. I would write until every single little knuckle in my fingers was sore. I thought that for sure I would have carpel tunnel by the age of 30. Here I am at 31 and my fingers, hands, and wrists seem to be functioning okay. Now, I don't know if some of you have noticed, but I blog. A lot. Almost every day. I am still in shock over the amount of writing I do considering the fact that I firmly believed that after school, I would never write again. Ever. Well, aside from documenting care in patients' charts. I am sure that I have a point to this paragraph, but right now it eludes me.
2)
I am adopting this kitty. I do not know who she belongs to,
but I am claiming her as a part of my brood.
Shhhh, don't tell Andrew. I am on the verge of becoming "the crazy cat lady".
My mama is coming for a brief visit this upcoming week. I am EXCITED. Some of The Bear's therapy sessions are placed on the back burner so that we can just visit and enjoy each other's company. We have no major plans other to visit our favorite British coffee shop called Friar Tucks Pantry. I have not been there since Mom's last solo visit. It is an absolutely delightful cafe run by a woman from, well, England--hence the British component of the British coffee shop. Yes, I realize that many people in England drink tea, but did you know that before tea, coffee was the drink of choice?
3)
The reason for my Keurig obsession
Speaking of coffee, I carried on a romantic relationship with my French Press. It brewed perfect cups of coffee that would help catapult me into my morning routine. That wonderful glass carafe that I seemed to shatter every 3 months of so could create such a wonderful cup of java. I believed that nothing could come between us. . . until Andrew bought me a Keurig for Christmas. I love my Keurig. I love my French Press. I guess you can say I am two timing.
4)
Chalk? What chalk? I didn't eat any chalk.
Every so often I find it difficult to not compare Ellie to other children her age. Typically developing children and children with Down syndrome. I know that I should not compare and yet, I do. Yes, I am guilty and it really serves no purpose. It isn't fair to Ellie. Rather than getting down about it, I have taken a step back and compared Ellie to herself and let me tell you, this little Bearity Bear rocks. In just two months, she has experienced a communication explosion! For starters, she now points. You know, uses her index finger to point out something of interest or to indicate something she wants. This is amazing! Also, Ellie finally calls me mama and she started saying dada. In the past 2 months, she has added ball, bear, more, moo, blue, green, and yellow to her vocabulary! I am one proud mama bear!
5)
I want to be this flexible. I mean, seriously, can you imagine if I were to rest my leg on the table like that?
Oh, people would frown upon it? Hum. I still want to be flexible.
Over the past week, I have really sat down and figured out my barriers to eating well and barriers to working out. I have discovered that I really only have a very small window of opportunity to work out during the week--in between Therapy #1 and nap time. I have also discovered that I get bored. Twenty minutes on the bike/elliptical/treadmill is about my limit and that is after listening to music, reading a magazine, and watching the TVs. Boredom wins out and I leave. I have no accountability. Therefore, I have decided that I really need to take more classes because you can't really leave in the middle of a class (well you can, but that would be rude and I prefer to be polite). The problem is that almost all the morning classes are completed before I even enter the gym and then there are no classes until the evening. Ah, a dilemma. I have looked into other gyms and unfortunately, cost is a huge factor. I made a beautiful comparison chart for you, but when I try to add it to the blog, it looked all disjointed. Speaking of gyms, if you haven't read about last week's poop incident, you really should. It is hilarious.
6)
The Chronicles of Ellie Bellie Bear along with other excellent special needs blogs has been nominated for the Circle of Moms Top 25 Moms with Inspiring Families. I encourage you to read some of the other nominees for their stories are very inspiring. Can't decide who to vote for?--vote for all of us (especially for Ellie Bellie Bear!) as you can vote for multiple blogs and you can vote daily. So please please pretty please vote for us by clicking on the emblem above (or on the emblem in the top right side bar)! Thank you!
7)
My dear friend Deanna Sader is still hosting her GetAway GiveAway in hopes of raising money to bring home her daughter Charity from Eastern Europe. It is really easy to enter for a chance to win a 3 night vacation anywhere in the Continental US. Click here to learn more about it. Act fast because the GetAway GiveAway drawing will be held on March 1, 2012.
I saw this idea on a couple of blogs and I thought I would give it a whirl.
I won this book in a give away on Tiffany's blog "Just a Little Bit Muchier Muchness" and I have been holding onto if for a while, because, I well, love it!
Recognizing that I am being a bit selfish in keeping this book all to myself, I have decided to pass it on to one of my readers. All you have to do is comment to this post and I will draw the winner on February 29th (Leap Day!). You can comment about anything--your favorite book, a brag about your little bambino, what you are making for dinner, etc.
From Grief to Celebration: How One Family Learned to Embrace the Gift of Down Syndrome by Margaret "Gary" Bender is such a powerful book. It is a quick read filled with honesty, raw emotion, and hope for the future. The book is beautifully written by "Gary", the mother of three children, one of which happens to carry that little some "extra" in her genetic material. The girl, now a young adult has led her family on an amazing journey.
Here is the official description: The story of how one family learned to embrace the unexpected birth of a daughter with Down syndrome. From the grief associated with an unexpected event to the celebration of life their daughter has taught them and brings to them every day. This book describes the ten stages the family went through, including grief, research, incorporation, inclusion, and finally planning in their journey to celebrating the magic of Down syndrome.
As I was snapping photos, Ellie signed "yellow" on the yellow page and "orange" on the orange page.
For those of you who do not have children with special needs, still comment as the many stellar reviews on Amazon.com were written by people who do not parent children with special needs.
Repost from earlier this week + some updates on how to enter.
Oh yes, I am serious. With spring break just around the corner and then summer vacation, I KNOW you are dying to win this fantastic give away.
So. . . who wants to win a glorious getaway vacation for 4 people for 3 nights?
This vacation includes not only the roundtrip airfare, but also a 3 night stay in the Hyatt. Plus, it is super easy to enter. Not only that, by entering to win this fabulous give away, you will be helping sweet little Charity be united with her forever family, the Saders.
Charity is a delightful little girl who is spending her days in an orphanage in Eastern Europe. Many of you know that these orphanages are not ideal for a child, any child, special needs or not. Charity, you see, has Down syndrome and unfortunately is not receiving the care that she so desperately needs. My friend Deanna and her husband, Rob are trying to raise funds to adopt Charity and welcome her into their home.
The Saders already have two children with a little something extra--Lucy and Ragen. Ragen is their biological child and Lucy is their forever daughter recently adopted from E.E. Lucy is thriving in the Sader household and I know that Charity will do the same.
Which brings me to the give away. I know you all are wondering just how you can win this vacation.
I want to sing aloud and shout from the rooftops. Yesterday guest blogger, Patti Rice of A Perfect Lily stated her plea for The Six Day Miracle. A plea to help the Dirkes family raise the necessary funds to travel in a few short days to meet their little girl, Charlotte.
Charlotte
Well, you all came through because as of today, the goal has been met! The Dirkes will be traveling on Monday! All because of you! That is $6,755 in just one and half days! Can you believe it?
Ellie and I want to say a big fat THANK YOU!!!!!!!
The give away for the Kindle Fire, Canon Rebel, gift cards, etc is still running strong for any more money raised in the next few days will go towards trip #3. The region that the Dirkes must travel to requires three trips. On Monday, they will be making their second trip and on March 17th, they will make their final trip.
