Friday, December 28, 2012

Iron Deficiency

It is not uncommon for a child with DS to have low iron levels. However, there are those that are elevated as well. Therefore it is not advised to give your child supplemental iron until you have lab work supporting a deficiency. Nutrivene does not add iron to their daily supplements, so it is safe until you obtain labs. Please check any supplements you may be giving your child. Presley had polycythemia at birth, too many red blood cells making her blood very thick. This can be dangerous, so they quickly took blood out through her umbilical cord to lower the levels. By 6 months, she had developed a mild anemia as evident by a low hemoglobin, the important part of the red blood cell that carries oxygen throughout the body. I monitored this since it was only mild and by 8-9 months, it had resolved on its own. However, our one year labs revealed she had a decreased iron level of 29, normal low is 30. You will obviously have iron deficiency long before you actually develop iron deficiency anemia. The iron stores and blood levels have to drop significantly before it affects the hemoglobin. This is another important reason why children with DS need more than the traditional lab work up at 1 year old. I mention all of the above to show how a child with DS can have varied labs, especially the first year, so do not take anything for granted. A good basic lab evaluation can be found at the nutrivene website under the Education Information section, then scroll down to "blood testing sheet" or (  ) At 18 months, I requested to recheck her thyroid levels, cbc, and iron. While her CBC (red blood cells, hemoglobin, etc..) were still within the normal range, her iron level had dropped to 24. I was glad I requested the labs to be drawn, because we could begin supplementing with iron before it began to cause an actual anemia. Also, her white count was low and there were many abnormal cells with target cells, smudge cells, poikilocystosis, tear drop cells, and others. Individually, these can mean various issues, but collectively, they steered towards iron defeiciency anemia. Some of the blood cells were not being formed correctly or being released while they were still immature. I began using liquid vitamin C and Floradix, which is supposed to be gentle on the stomach and non constipating. Unfortunately, I found the latter not to be true. Presley has a history of constipation due to the low muscle tone since 2 months old. It had resolved when we began using the thermos cereal ( as recommended by the nutritionist through NACD (National Association of Child Development). I ran out the week I began using the iron supplement and after one week, she was crying and not sleeping just as she had previously when she was unable to go. I had to use a glycerin suppository for the first time to "get things going" and we are beginning the thermos cereal again today. Fingers crossed things get back to normal. As for the Vitamin C, it increases the absorption of the iron and she doesn't seem to mind the taste. While reading, I was also reminded that the circumin has iron chelating properties. This isn't good news since circumin has so many benefits. My husband and I discussed it and decided to continue at the current dose of circumin and have the labs drawn in 8 weeks. Our genetic clinic has been so gracious to give us a standing order to repeat the labs when we feel necessary. If the labs do not show progress, we will discontinue the circumin and repeat labs again in the future. Having a child with Down Syndrome is a wonderful experience, but you need stay focused on enjoying the journey and not just the destination. It can be overwhelming at times, and just when you think you can switch to autopilot for awhile, you may run into some turbulence. Many blessings, Robin Tolliver

For more information about anemia and Floradix, check out these websites:

This is some more information taken from the excellent book Super Baby Food by Ruth Yaron. Required daily intake of iron by age: birth to 6 months: 6mg; 6-12 months: 10mg; 12-36 months: 10mg; A cast iron skillet recommended. Allow sauces to simmer to increase the amount of iron absorbed. Stay away from processed foods such as white flour, ice cream, and soft drinks which contain additives (phosphates) that decrease iron absorption. Animal foods such as small amounts of meat, poultry, or fish should be given with meals containing iron rich foods to increase iron absorption. Victamin C great improves iron absorption so fresh orange juice with whole grain millet or brown rice ceral is a good combination. Get your iron from ferrous, not ferric, compounds as ferrous is more readily absorbed by the body. Unfortunately ferric is use by manufacturers because it has a longer shelf life than ferrous, so read your labels.

So these are the things I am doing to raise Presley's iron levels:

1.  Floradix oral iron supplement 7 - 10 mg daily
2.  Vitamin C 250 mg liquid with iron supplement
3.  Orange daily, attempt to give after iron supplement meal
4.  Cooking with cast iron skillet
5.  Adding more iron rich foods into her diet, to include thermos cereal, vegetables, and select meats
6.  Black strap molasses 1 tsp twice a day - super rich in nutrients and iron

Lastly, I will recheck her levels in 8 weeks after beginning the iron to see if levels are coming up.  I will also request an iron study which will include TIBC, Iron, reticulocyte count and Ferritin levels.

Saturday, December 15, 2012

Pictures of Payton and Presley

I wanted to post some pictures of my sweet girls, Payton (age 3) and Presley (age 18 months), so you can see who I am referring to all the time. Tricia will post one of Emma and Olivia soon too. It just makes it more personal. Enjoy! Robin

Wednesday, December 12, 2012

Famous people with family members with Down Syndrome

Sarah Palin (former governor Alaska) – son name Trig
John C. McGinley (actor, Dr Cox from Scrubs) – son named Max
Jamie Foxx (actor/comedian) – sister DeOndra
Dale Evans and Roy Rogers – only biological daughter Robin
Albert Pujols (St Louis Cardinals) - daughter named Isabella
Cathy McMorris Rogers (US Representative) – son named Cole
Pete Sessions (Congressman) – son named Alex
Gene Stallings (former Univ of Alabama coach) – son Johnny
Joe Diffie (country singer) – son named Tyler
(not pictured)

Straw therapy follow up

I recently emailed Talk Tools with several questions after beginning their straw therapy program. I reviewed this with my Speech therapist, and we concluded that if your child is proficient in straw drinking prior to initiating straw therapy, then you may try to begin with straw #4. If straw #4 is too difficult, then back down to straw #3. If they have not used straws before, then begin with straw #1. We will change to #4 this week and see how it goes. Here is the response I received: Thank you for your question! When beginning the straw drinking hierarchy, you can either begin at straw #1 or #4. You are correct in making sure the child is only putting 1/4 of the straw in their mouth, this way the child is using good lip rounding and the tongue is retracted. It sounds like you might want to try straw #4 with your daughter. If she only puts 1/4 of the straw in her mouth, then you will not need to cut the straw (straw #1 and 4 are the only ones you can cut). If she is putting more than 1/4 of the straw tip in her mouth then you will need to cut the straw to 1/4 inch above the first twist. By straw #4 the tongue must be completely retracted in the mouth and the jaw is stable. She will not be allowed to suckle on straw #5. If you see a forward and backward movement of the jaw - then she is still suckling. The criteria for success involves: 1. No liquid leakage or air leakage between the lips. 2. The jaw should be relatively still/stable, indicating jaw-tongue independent movement. 3. Lips should be slightly protruded. 4. The child is able to drink 4 ounces of liquid in 2 min or less. If you give your daughter straw #4 - you will know if it is too hard - she will be struggling to suck liquid up - then you will return to #3 until she meets criteria. I hope this helps and let me know if you have any further questions! Monica Purdy, M.A., CCC-SLP Speech and language Pathologist Oral Placment and Feeding Specialist

Saturday, December 8, 2012

Give your child a healthy advantage with these two recipes full of good nutrition

Tricia and I have a nutritionist for our girls He is part of the neurodevelopmental program NACD that we use. He also has a daughter with DS, so he has been greatly consumed with learning the nutritonal needs of children with DS. Here are two great recipes he recommended. We make this for all of our children.

The first recipe is for Thermos cereal. It is composed of healthy grains, seeds, and bran complexes. It looks difficult and intimidating at first, but it is very easy once you get used to it. After you make up a batch, it stores in the refrigerator for a couple of weeks. You then use two tablespoons per child each day. I mix it with applesauce and Presley loves it. Here's the official recipe:

The second is called a Potato Peeling broth. You take all the vegetables listed and add distilled water, boil for 20 minutes, strain, pour the liquid only back into the water jugs. Freeze some if needed. I use this by mixing about 1/4 cup broth, 1/4 cup low sugar juice, and 1/2 cup water. Tricia adds some chicken broth to hers for additional protein content. When you see the vegetable list, you are going to think there is no way my child will drink this, but my 3 year old daughter loves it. You can not even taste it. Since I began this a couple of months ago, she has not had even a sniffle, until 3 days after I ran out. I have a picture below of what my stove looks like when I am cooking it. Here is the official recipe:

Thursday, December 6, 2012

Straw therapy

Tricia and I began our girls on straw therapy last month shortly after they turned 17 months old.  They were both already proficient in straw drinking before they were one year old.  We read many blogs and noticed that many of the children who had good speech and appropriate oral motor tone had utilized straw therapy, so we are giving it a try.  Currently, we are only a few weeks into it and on straw number 2.  I have emailed Talk Tools to clarify how long do we stay on one straw if we have good lip rounding and closure with no leaking already.  I have read one week is the minimum.   Also, do we continue the straw hierarchy in order or progress quicker to the more difficult straws?  We will update as we learn more.  Please feel free to add your experience or opinon about straw therapy.

Straw kit:

More information:

Article by Sara Rosenfeld Johnson:

How to teach straw drinking:

Monday, December 3, 2012

Healthcare Guidelines Specific For DS

The pediatric health guidelines for caring for a child with Down Syndrome were updated in 2011.  Your healthcare practitioner may not be aware, so please copy this and provide them with the new standards.  Healthcare evaluations for a child with Down Syndrome is very different than the well baby check ups for typical children.

2011 Healthcare guidelines for DS:

A Father's Perspective- Letter to His Daughter

Heath White's journey has been one very close to the heart of Robin and Seth Tolliver.  Heath's story helping Seth through his healing and acceptance process.  He is a true inspiration to all father's and his story is incredible.  Below you will find the letter written by Heath along with a story that ESPN did on him and his family.

A Father’s Perspective                                                                                                                    

Dear Paisley, I wanted to take a second, while the feelings are still relatively fresh, to let you know about the emotional rollercoaster you have put me through for the past 2 years.  I started writing this as a speech to be delivered when you were 18 months old.  I wanted people to know just how much I love you and how much you have taught me, but I found myself not being honest about my initial reaction to having a daughter with Down Syndrome.  I was afraid you would someday find out how scared and selfish I used to be.  The more I thought about it, the more I decided that I want you to know the truth.  Maybe our story can help other people see the light sooner than I did.  Letting you know how much I didn't want a daughter with Downs shows the full spectrum of emotions you have taught me and the amazing influence you and other kids with disabilities can have on this world.  I have written probably hundreds of papers in my life and between a long academic and military career I have given just about as many presentations, but this one could be my most challenging.  Writing a good paper or speech involves two things, knowing your topic and knowing your audience.  In both cases it’s you, Paisley.  The topic is the easy part, but since you’re so little I have no way to know what your level of reading comprehension will be.  Despite this uncertainty, I am going to write to the woman I know you will become.  I will keep this letter with me to motivate your mother and I to work so that you can someday fully grasp the love behind these words.
To say that you now define me is no small statement.  I've made my life seeking degrees and titles that let people know what I've accomplished, but there's no title I'm more proud of than simply being Paisley's Dad.  Two years ago if you would have told me I'd view my greatest accomplishment as having a daughter with a perceived disability, I would have told you, you were crazy.  But today I am making a feeble attempt to put into words my journey and love story with you, Paisley Ella White.
As I said before, some of this is not pretty.  If you think I'm a horrible person in the beginning, that's fine.  I want to lay my soul bare, so that in the end, when I tell you that I love you more than life, you will know that I've been completely honest about everything, and you will have no reason to doubt my love.  My ultimate goal is for others to learn from my mistake.  If they can see the inevitable love they will have for their child sooner than I did, then perhaps they can live without the regret of having thought of their child was anything less than the perfect and beautiful little person you are.  
To put everything in context, let me recite my resume for you.  This was my favorite topic of conversation before you came along.  I was Captain of my High School football team.  I graduated 3rd in my class and attended Northwestern on an Academic scholarship where I graduated with a 4.0 GPA.  I received a scholarship to SMU School of Law but chose to join the Air Force and fly bombers instead. I married my high school sweetheart, your mom the head cheerleader.  I have my Master's in Aeronautical Science again with a 4.0 cumulative GPA.  I've run over a dozen marathons with a personal record of 2:58 in the Boston.  As a pilot, the Air Force and several other government agencies have put me through countless physicals and mental evaluations to screen me for almost every disease or abnormality known to man.  In my three yearly physicals, the only comment I ever get is, ”Wow, your pulse is so               low you must a lot.”  I think that’s why your heart defect scares me so much.  My goal was always to leave the military, fly for the airlines, get a house on a lake, and retire with a couple of million dollars.  Along the way I guessed we would have a couple of kids probably a boy and a girl, but once they left for college we probably wouldn't see them much.  They'd be too busy being successful and chasing goals like me.  It was the real American Dream, apple pie kinda future.
Read that last part again if you need to, but nowhere in there did I mention raising a child with what society views as a disability.  That would be beneath me.  I've got genetically superior genes.  I come from "Good Stock".  At 82 all four of your great-grandparents are still alive; no one on either side of our family has a child with any type of abnormality.  As I said before, look at my numbers, my titles, or degrees.  I'm a winner with winner’s blood.  Having a child with a disability was for nice, loving couples, who would make lemonade when life gave them lemons, not hard charging go-getters like me.  Besides, I had always been supportive of people with disabilities.  Despite the fact that we didn't know a single soul with Down Syndrome, we went to the Buddy Walk for the 3 years prior to your arrival.  I had also volunteered at the Special Olympics, but this was all for other people’s kids, not mine.  Looking back on it I think it was like thanking God for making me healthy.  It's sad to say, but it was like passing a car wreck on the road.  In my view Down Syndrome had wrecked their lives.  Like any highway tragedy, I felt sorry for those involved, but I still had to slow down, look, and thank God it wasn't me.  In my mind by going to those events, I was putting in my time, so something like that wouldn't happen to me.  In fact, when I found out for sure you would have Downs that's exactly what I said.  Why me?  I've been supportive of people with disabilities.  I've done what my momma taught me.  I never used the "R word", I didn't pick on handicapped kids in school, or stare in public, so why me?  Looking back I can tell you why me?  And it was from a brief encounter with an angel at one of those Buddy Walks.
They say hind sight is 20/20, and looking at it now, I should have read the signs that you were coming and that you'd be special.  In addition to the Buddy Walks, your big sister's triple screen, or prenatal blood test, came back positive for Down Syndrome.  Since there is such a high false positive rate and since I was convinced of my genetic superiority, I was confident the test was wrong.  Three weeks later the ultra sound confirmed that your first sibling did not have Downs.  Although the ultra sound confirmed my perceived genetic superiority, it dealt a serious blow to my ego, because I was having a girl.  This didn't match with my view of the future.  The boy was supposed to come first.  I worked hard to change my vision of the future.  Slowly I replaced footballs and muddy boots with dance leotards and tea party sets.  It was difficult but I did it.
Fast forward 2 years.  Same triple screen, same ultrasound, same gender, different results.  The doctor’s said, “There’s a high probability you’re daughter will have Down Syndrome.”  This is where my downward spiral began.  We went back every two weeks for ultra sounds, and every time the tell-tale signs of Downs were there, the thick nuchal fold, failure of the embryonic sacs to fuse at the proper time, and a heart abnormality.  I began to pray constantly.  I was no longer cocky and in control.  Before this I would        pray and just thank God for your mom and sister, my health, and all the material things he had given us, but now I prayed for a miracle.  I would say a girl is fine.  I'm not picky any more, just let her be healthy.  This was part of the bargaining process I'll talk about later.  Now everyone knows I’m terrible with surprises.  If the information is out there I have to have it.  As a result I pressured your mom to have Amniocentesis, so I could know for sure.  I was so selfish at the time that to me the risks to you and your mom didn’t outweigh my desire to know for sure.  Needless to say, it came back positive.   Replacing footballs and muddy boots with dance leotards and tea party sets is one thing, but to replace the captain of the football team with a physically and mentally disabled child was incomprehensible at the time.  A world of questions began to flood my mind.  What would your potential be?  Would you be able to speak?  Would you even know who I am, or would you just set in a catatonic or vegetative state and stare into the distance locked away in your own undeveloped mind?  Again, all I could think was why me?  I'm as healthy as a horse, I've served  my country during war, I've never done drugs, and always paid my taxes.  Like I said, this "Daddy thing" was always supposed to be a part-time gig for me.   It was going to 18yrs then see ya.  I didn't sign-on to have a kid with me for life much less one with a disability.  How was this part of the American Dream?  I already had a little girl.  This one was definitely supposed to be a boy.  I even already had the name picked out.
Later on I read that learning you're going to have a child with Downs is like experiencing a death.  You have a vision of who your child will be, what they will look like, and all they will accomplish, then one little chromosome changes everything.  It's also been compared to being a child at Christmas and waiting to open a big shiny present.  You can tell by the size and shape that this is the one that you really wanted.  Now imagine when you open it, it's broken.  That's what I felt, like I was getting, a broken baby.  I felt like I was in Junior High all over again.  How could I go to school knowing all my friends would be wearing the newest cool clothes and I was wearing stuff from Goodwill?  All I could think about was myself and how you reflected on me.  I'm more ashamed of this than anything in my life but that's the way I felt, like you were broken.  I went through the entire grieving process, and all the emotions that accompany a death. First, it was denial.  I caught myself saying, "this isn't happening to me!"  Next came anger.  I was mad at everyone, God, your mom, and  everyone who never had to experience adversity during pregnancy.  Like I've said before, I would ask, "why is this happening to me?"  Then came endless bargaining.  I would tell God, "If you take away the Downs I promise I'll be a better person."  Next came depression.  I told myself' "I don't care anymore.  I'll just go to the airlines, never be home, and leave your mom to deal with this."  The last stage of grief is acceptance.  This happened shortly before you were born.  This is where you say, "I'm not looking forward to this but let's do it."  I went through them all, but unlike grieving there's another stage to having a baby with Down Syndrome, and that is pure joy.  This is the stage I’m in right now.  
As you probably know by now your Dad likes to consider himself a thinker.  So, you really threw me for a loop.  No matter how much studying, logic, or reasoning I threw at this problem there was no solution to be found.  And unlike a physical threat there was no person or being I could fight or out run.  It was like looking down the barrel of a loaded gun with a Downs Baby ready to hit          me right between the eyes.  Only that's not where you got me.  You went straight for the heart.  I wish I would have known then what I know now.
When I finally reached the acceptance stage a month or two before you arrived, I decided to do what any good military officer would do if heading into a conflict, study my enemy, Down Syndrome.  I needed to know what it was, what were it's strengths and weaknesses, and how bad is this really going to be.  You see, despite the time I had spent around children with Down Syndrome, I had never truly seen them for who they are.   If I had of been a participant rather than a spectator at those events I would have known Downs isn't the enemy, it's society's perception of Downs that is the enemy.  In the course of my readings, parents would write about what a joy their child is or how they will teach you so much, or they are the glue that holds their family together.  During my acceptance phase all I could say to this was "horse hockey."  These were the statements of weak minded optimists, losers who had accepted defeat to Downs.  You see for me to be happy about having a daughter with Downs meant that all that I had worked for, all the prestige and honor I sought was a charade.  It meant there could be happiness without accolades and honors.  Although I accepted having a daughter with Downs, nobody said I had to like it.  Little did I know that all the anger and disappointment in the world didn't stand a chance against the light in your eyes and the toothless little smiles on your face.  
I wish I could tell you that the day you were born all that anger and disappointment just  miraculously melted away.  I wish I could tell you that when I saw other babies beside you I didn't notice your short little neck, your almond shaped eyes, your nub of a nose, or the gap in your toes, but I did.  I wish I could tell you I wasn't jealous of young unwed couples who had smoked and drank through their pregnancy only to have healthy typical children, but I can't.  What I can tell you is that the first time you laughed when I tickled you all my anger and disappointment vanished forever.  I can tell you that since that epiphany, not a day goes by that I don't kiss your short little neck, your almond shaped eyes, your nub of a nose or the gap in your toes.  And I can tell you that if I could go back in time I wouldn't change anything about you.  To me you're perfect, because you represent what's good in me.  Although you're only 18 months old you've taught me so much.  You've taught me to not take anything for granted.  That it's not about who gets to the finish line first but how far you come to get there.  You’ve taught me that victory doesn’t come from the defeat of others but from doing what you thought was impossible, and finally, you’ve shown me that a genuine smile is contagious.  I often think that you’re much wiser than you appear.  In my opinion you simply choose to have Downs because you know that's the only way to reach people like me.
It wasn't long after you were born that people would ask, "how's the baby?"  I would say, "she poops, pees and sleeps as good as any baby."  And it was the truth.  I finally realized you were as good as any baby.  You hadn't changed; the symptoms of Down Syndrome had not changed.  Only my perceptions had changed.  I went from saying why me to saying why not me, instead of saying why Paisley to saying why not Paisley?  A little bit of my confidence returned.  I knew that if there was anyone in this world that could help      you reach your full potential it was me and if anyone could make the best out of a bad situation it was you.  I had a new goal.  Not to cure you of Down Syndrome, like your Mom and I have said, I wouldn't take the Downs away if I could.  Without Downs you wouldn't be the Paisley we know and love.  Without Downs you'd be just like everyone else, and how boring would that be.  My new goal was to help you reach your full potential and live the happiest life you can.  I like to kid myself that you knew I would turn around the whole time and that's why you picked me to be your dad, but I know that you really picked your Mom and I'm simply the box that came with the toy and cheeseburger in your Happy Meal of a life.  I'm flattering myself at that, but like it or not you're stuck with me.  
I had mentioned an experience I had at one of the Buddy Walks.  This particular year we took our Yellow Labrador Retriever, Cletus, to the walk.  I was squatted down letting a group of children pet him when a 4 or 5 year old little girl with Downs walked up without saying a word, moved my arm off my knee, climbed in my lap and then reached over and put my arm back around her.  I looked around for her parents; sure that someone was going to accuse me of being a kidnapper, a pedophile, or at best just a creep.  After a few seconds with her head leaned back against my shoulder, her mother turned around and smiled at her daughter.  To my surprise she wasn't quick to snatch her daughter from my embrace.  I appogetically said that she just climbed in my lap.  Her mother laughed and said, "yea, she does that."  The mother reached out for her daughters hand and the girl walked away without ever looking back.  It was a notable experience at the time, but I never grasped its significance till you came along.  Looking back on it now I think she was testing me.  I dream that you were up in heaven looking for a good daddy and told her to take my hug for a test drive.  I joke with your mom that it's either that or she gave me Downs.  Either way is fine, because I got you.  To say it was one of the most memorable and life changing experiences I've had, is an understatement.    
As a marathoner, there's plenty of time to think.  It's on long runs that I wrote my thesis, painted my ever changing picture of the future, or now daydream about the women my daughter's will become.  Around the time you were 6 months old the guilt began to sink in about how I had felt and all the pressure I had put on your mom for having you.  I decided to run the Little Rock Marathon to show people how proud I am of you, how anything is possible, and to punish myself for being so selfish and ignorant.  Every training run I thought about you and how you would drive me to be a better father, husband, friend, and runner.  You were the gas that fueled my engine.  Every time it hurt or I wanted to quit, I thought that it was nothing compared to the challenges you had faced and will have to overcome your whole life.  What kind of example would I be setting if I gave up and didn’t give it everything I had?  It turned out that the race wasn’t the punishment I had been seeking.  To tell you the truth, I probably got more out of it than you did.  For those 26.2 miles, I didn't feel anything but joy and pride.  I couldn't wait to round the next corner or top the next hill so everyone could see just how beautiful you were and how you were already exceeding society's expectations.  At the finish line we were interviewed by a couple of TV stations.  When they asked if it was hard pushing a baby that far, I just laughed and told them that it was easy to    run that far when you've got someone with angel’s wings pulling you along.
Before I go, I want to tell you a couple of funny stories comedians have told that summarize what you've taught me.  The first one talked about the recent green movement and radical environmentalism.  He begins a rant about how pompous and self-important we are as humans to believe that we can destroy what it took God so long to create.  Specifically he talks about all the years we buried plastic before recycling.  His conclusion was that maybe we're not at the top of the evolutionary ladder.  Maybe Gods ultimate goal was to get plastic and he only made man so that we would make plastic for him.  That's the way I feel now.  I feel God only made me because he wanted a Paisley.  My whole life I pictured myself as the main character in the action/adventure that is my life.  I think that's why it took me so long to have kids.  I mean look at it, none of the superheroes had kids.  Indiana Jones, Luke Skywalker, and Maverick in Top Gun, none of those guys were dads.  You've taught me that there are other ways to be a hero than saving the world from a diabolical master mind.  You've stolen the show.  I've realized that in actuality I'm just a supporting character in the inspirational/comedy that is Paisley's life.  I don’t know how this story ends, but I think everyone will tell you I’m in  love with the leading lady.
The other story talks about a group of Special Olympic athletes on a commercial flight.  During the course of the flight they experienced a mechanical malfunction and were forced to make an emergency landing.  When the Captain made the announcement to inform the passengers he told them, "Ladies and gentlemen don't be alarmed be we just experienced a mechanical malfunction and we're forced to shut down an engine.  We will be making an emergency landing but don't to be alarmed, everything is under control.  After we land, do not be surprised if we are met by fire trucks.  They are only there for as a precaution.  We will let you know if anything changes."  The comedian said that as his life began to flash before him, he heard one of the Special Olympic athletes say, "fire truck?  We're going to get to see a fire truck?"  The comedian said he thought to himself how amazing that attitude was.  Here he was picturing a fiery death and regretting all his mistakes, while this kid in the back could hardly contain himself at the thought of seeing a fire truck.  You've taught me to look for the good in all situations, and it's never as bad as I think.  You're proof that sometimes the things that you dread the most can become your most prized possessions.
The last little joke that reminds me of you was told by a comedian on a morning show talking about severe turbulence on a flight.  He said that the plane was bumping around pretty violently when it hit an air pocket and dropped several hundred feet.  He said his already vice like grip tightened on the armrest and gasps rippled from the passengers around him as one little 5 year old little girl across the aisle threw up her hands and yelled, "WEE!!"  You've taught me it's all about perspective.  A turbulent flight can either be a horrifying experience or the best rollercoaster ride you've ever been on.  A disability can either be a reason to wallow in doubt or exceed the world’s expectations.  Negative words and stereotypes can either cause you to not try new things or they can cause          you shatter long held misconceptions.  
In conclusion, Paisley, you're my superstar, you're my fire truck and you're my wee.  The other night I went to check on your sister and thought about how it won't be too long till she's gonna be too busy chasing down her dreams to play with me.  I went in your room next and you were so small and peaceful, when it struck me.  The one fear that bothered me the most about Downs, having a kid with me forever is now the complete opposite.  Now my biggest fear is that you too will outgrow me and move on in search of your own dreams.  Before you were born I only worried about how your disability reflected on me.  Looking at it now, there's no better mirror in the world.  You can find the light in the darkest places of my soul and reflect them with a warmth that rivals the sun.  You're my light in the dark and it's a privilege to be your dad.
Love Always,

***** Heath White began pushing his daughter Paisley in marathons to promote Down Syndrome Awareness and was followed by ESPN all over the country. Together they ran just over 321 (significant for Trisomy 21) miles with the final race being the Little Rock Marathon March 2012.  He has plans for her to run her own races now to continue the positive awareness .

The Tolliver's were so inspired that they too are racing to bring awareness.  Their first race was the Little Rock Marathon which ironically was Heath and Paisley's last.  We are so fortunate to have a family like the Tolliver's to carry on with what Heath White began.

Friday, November 30, 2012

New California Facebook Group

From a great mom in our group:

    We share a unique set of laws here in California so please join us in supporting, inspiring & educating each other! Please invite and add all your friends with children with Down syndrome and who live in California. This is our link to share: 

    This is a closed group, members only. Please feel free to request a membership. You may speed up approval time by messaging the Group Owner or an Administrator and telling them what your relationship is with a person with Down syndrome and what part of California you live in! We look forward to getting to know you!

    *Be advised* You may receive a message from Administrator requesting more information pending approval, please BE SURE to have your privacy settings set so the public can message you! YOU WILL NOT BE ADDED IF WE CAN NOT MESSAGE YOU SO PLEASE DON'T HAVE YOUR SECURITY SET SO HIGH THAT WE CAN NOT MESSAGE YOU! In addition: IF we do not hear from you within 7 days (OR if we can NOT send you a message!) your application will be rejected! You are always welcome to reapply, BUT, either change your settings to allow messages or send a message to one of the Administrators. This is for YOUR SAFETY, and the SAFETY OF YOUR CHILDREN! 

We have a Facebook group here in Arkansas and it is one of the best things that has happened here. I strongly recommend surrounding yourself with people who have common concerns and problems.  We try to get together once a month and we all have a ball. 

Wednesday, November 28, 2012

Oral Motor Feeding Information

(Taken from   then click on “Down Syndrome”) Please visit this great website to view the article and pictures. This is so important to learn while your child is young.

I am definitely not an expert when it comes to Down Syndrome-Oral Motor Feeding Skills….however….have been doing a significant amount of research and have taken (and continue to take) courses offered by Lori Overland…so I feel as if I do have information to share. If anything…..I hope to help parents and lead them in the right direction.

First I want my readers to click on the link below. This article was written by Sara Rosenfeld-Johnson…she is basically the guru when it comes to feeding and Down Syndrome. The link below discusses the 7 Myths about Down Syndrome:

This blog provides information related to the oral motor myths listed above….and then information about bottle and breast-feeding your baby with Down Syndrome:

This blog offers information about feeding and I really liked the pictures provided in reference to spoon-feeding your baby with Down Syndrome:


A very important aspect for oral motor therapy with babies/young children with Down syndrome is discouraging tongue thrust and encouraging lip closure. A very simple way to get this “oral motor therapy” in is in the way of spoon feeding. There’s a certain technique which can be done when spoon feeding to facilitate this.

This can be used on children who are very young – from the very first time they start eating solids!

Hold the spoon sideways, so that the side of the spoon is touching each side of the mouth, let the child get the food off it that way.

Immediately turn the spoon the other way (still sideways, but facing a different direction) and feed the child.

Then turn the spoon again the opposite direction and let them get the last bit of the food off.

It is best for this to be done 3 times in a row, like the above picture shows, because then it helps keep that tongue in. If you just do the sideways spoon feeding once, then the child can put his tongue out to help swallow the food or lick the food off of his lips. After you do it 3 times the child will hardly stick his tongue out at all after that last bite, since he has already been swallowing the food.

Try it on yourself – Feed yourself with the spoon like you normally would – your tongue protrudes forward this way. Feed yourself with the spoon sideways, your tongue is pushed back. It works so well.

**** please visit: for oral motor feeding tools needed for children that have Down Syndrome, low muscle tone, oral motor weaknesses and sensory feeding concerns.

I have been taking another class offered by Lori Overland…and wanted to post pre-feeding exercises that should be used prior to your feeding sessions. These exercises are not only for children that have Down Syndrome…but also for those who present with low muscle tone. The goal of the exercises is to improve strength and mobility of the muscles needed for feeding and also for speaking.

PRE-FEEDING EXERCISE                                                                                                                      

1.   Palatal massage: the goal of the palatal massage is to maintain the shape of the palate. Find the palatal raphe:

 The palatal raphe is a rather narrow, low elevation in the center of the hard palate. You can run your tongue along the palatal raphe…starting from the bump behind your teeth…follow the palatal raphe until you get to midline. It is like you are running your tongue along a line…you should be able to feel it. The reason you are running your tongue along the raphe is because you need to find the midline point. You will know that you are midline on the palatal raphe when you have found the bump. So that will be your starting point for this exercise.

I think it is pretty easy to find the bump at the top of the palate. Remember to start your tongue behind your front teeth…and run your tongue along your palate…straight back….when you find the bump you will know that this is the starting point….the point where you will start this pre-feeding exercise with your little one.

Now…inside your little one’s mouth you will find the bump…the bump lies between the two halves of your palate. Once you find the bump on her palate….use your index finger and run the pad of your index finger down to the lateral ridge (the spot where her teeth will insert)….then roll back up to mid line to the palatal raphe…and then back down to the other side of the mouth. So to be clear…you are running your finger sideways…from the bump on the top of the palate to the lateral ridge…(the spot where her teeth will insert)

Each side should be massaged four to five times prior to the feeding. The goal of this exercise is to maintain the shape of the palate. Remember the palate fuses around one year of age.

2.  Maintaining Lateral movement of the tongue:

For this exercise you should use:  A Toothette

….be sure to cut the wings of the Toothette when working with an infant or toddler…the Toothette is too large for an infant or toddler with the wings.

An infa-dent  or A Nuk brush:   

   All of these tools can be purchased at

The goal of this exercise is to stimulate the sides of the tongue to improve tongue lateralization. This means the child’s ability to move the tongue to the side. Remember this is a skill she will need for feeding and for speaking. When working on this exercise start at the back of the tongue and move towards the front of the tongue. Be sure to use four to five strokes on the left side of the tongue and then four to five strokes on the right side of the tongue. When you are doing this exercise….you should see the tongue moving to the side.

3. Maintaining Phasic Bite/Munch Pattern:

What is a phasic bite?: A neurologic reflex present in infancy where pressure on the gums causes rhythmic opening and closing of the jaw.

Use your index finger and stimulate the lower gums from back to front. You are looking to see if this caused a rhythmic opening and closing of the jaw……a munch pattern. This exercise will teach chewing skills. ( I will post over the next week or so…the chewing hierarchy….specific to exercises that should be done to improve chewing skills in little ones with Down Syndrome or with low muscle tone).

4. Pacifier Rock:

I could not find a good picture of the pacifier that you should use…just be sure it is not one that has a flat-bed on the bottom of the pacifier (the part that goes in the baby’s mouth)….it should be an elongated shaped pacifier.

With your middle finger under the jaw….and your pointer finger on one side of the mouth…in the corner…and your thumb on the other side of the mouth…in the other corner….you will be ready to help your little one.

Use your middle finger to help the jaw to come forward…and your thumb and index finger to move the lips into a pucker/kiss. You will be using your middle finger to rock the jaw back and forth….and your index finger and thumb to improve lip rounding.

5.   Tongue Bowling:

Children with low muscle tone may have a flat tongue that may protrude forward.  Stroke the tongue…start at the tip and work towards mid-line…this should create tongue bowling. This exercise should be done four to five times.
6.   Massage:      

Using your hands or the textured sensory bean bags offered by

Massage wakes up the muscles…very good for children with Down Syndrome and children with low muscle tone.  Using your hands or the textured sensory bean bags offered by  The following exercises should be done four to five times:

1.       Start at the TMJ

              and move down towards the corners of the lips         .

2.      Start on the sides of the nostrils and work down towards the lips.

3.      Start under the nostrils and work down towards the lips.

Jigglers add calming and organizing sensory input, and can be used for oral exploration, reducing “fixing” in the jaw, and increasing awareness. Instructions included. Requires one AA battery which is included with the Jiggler.  However….be sure to know that too much vibration on low tone children may break down muscle tone. Be sure to consult with your licensed speech and language pathologist before using a vibrating tool.

7.   Tap and tone:

Just like if you were going to the salon and getting a facial….you will be “tapping” the child’s face with the palms of your hands….the goal is to tone and strengthen the muscles of the face and cheeks. To strengthen the lips….tap on the lips and make the “O” sound….just like in the song Old MacDonald had a farm…remember….E-I-E-I-”O”. Tapping on the lips will improve the tone and strength of the muscles of the lips and improve lip rounding.

8. Upper lip mobility:

You will be using the Toothette indicated above…found on to improve upper lip mobility. Remember for infants and toddlers you may have to cut off the wings so that it is the right size for your little one. You can wet the sponge if the child does not like the texture of the Toothette.

The Toothette goes inside of the mouth….start on the corner of lips…and move the toothette under the lip to midline….repeat this four to five times…and then move to the other side of the mouth. Midline…is the middle of the top lip.

With older kids you may purchase:Vibrator & Toothettes – T alkTools®   This will add more sensory information and more likely to get mobility. With the older kids you may also use the Z-vibe….it comes with three different heads.


To promote upper lip mobility use the Z-vibe with the yellow head. You will be doing the same exercise indicated above under upper lip mobility. The Z-vibe adds more information. It has a firmer rubber tip. Remember to perform the exercise from corner to midline.

If the older child is resistant to using these tools…use the back of a toothbrush…use a vibrating toothbrush….some of the older children can be taught how to do this exercise on their own.

9.  Ice Stick to improve lip rounding:

Ice Sticks can be used to develop oral placement/feeding and speech therapy programs and are excellent for achieving lip rounding and lip closure. The ice stick can be purchased at

In order to improve lip closure place across the lips (so the ice stick should be presented horizontally) and have the child make closure with their lips on the ice stick. You can also ask the child to kiss the ice stick to improve lip rounding. To further improve lip rounding: place the ice stick inside of the child’s mouth (vertically).Lip rounding can also be addressed with the Jigglers indicated above….turn the Jiggler on and ask the little one to kiss the Jiggler.

What if your child can NOT pucker her lips for a kiss. How can you help her with lip rounding……therapist should stabilize the jaw with her middle finger under the mandible….so you do not want the jaw to move….index finger and middle finger should be in either corner of the mouth. Since the child is not able to pucker her lips for a kiss just yet….you will be using your index finger and thumb to help her to get her lips into the pucker…being sure to keep her jaw stabilized with your middle finger. Now help her to kiss the Jiggler.

Remember…..too much vibration for children with low tone may break down muscle tone….so be sure to consult with your licensed speech and language pathologist for guidance. The vibrating tools should not be used as a toy….it should only be used therapeutically.

HYPER-SENSITIVITY AND HYPO-SENSITIVITY WHAT DOES IT MEAN:                                                             

Children with Down Syndrome typically present with low muscle tone. Children with low muscle tone may    present with oral motor feeding concerns. I have spent some time discussing Down Syndrome feeding…so please be sure to read under the Down Syndromepage for more information.

Today’s post is specifically related to two factors with regard to Down Syndrome feeding: hyper-sensitivity and hypo-sensitivity. Children with Down Syndrome typically are hypersensitive to texture…..this means that they may have difficulty in tolerating various textures. What this means is that their motor systems may have some difficulty in chewing…therefore…following the chewing heirarchy needs to be addressed (I will post on this in the next few weeks). Children with low muscle tone prefer crunchier textures…and also foods thare are easy to swallow. The crunchier foods due have to be chewed….however, their hypersensitivity is related to the textures indicated below. So remember…they have hypersensitivity to texture…and the motor system may have difficulty in chewing, however, the child’s preference will be to those hard crunchy foods. It is important to remember that their motor systems may have difficulty in chewing (that is why the chewing heirarchy is important). Down Syndrome children will prefer the harder crunchier foods….and may have difficutly with various textures as indicated above.

In my experience, I have found that one of the hyper-sensitivities may be to certain “mixed textures“, for example, a Stage 3 baby food is a mixed texture. You have the pureed food…and then bits and pieces of a more solid texture. Children with hypersensitivity may have difficulty with this mixed texture. So, I have learned that children with a hypersensitivity when it comes to eating…this hypersensitivity is specifically related to texture. Not only is the texture issue related to mixed textures…these children also typically have difficulty with the “in between textures“….that is what I call them. These are the textures that do require some chewing….however are NOT solids. Examples of the in-between textures include: soft cheeses, eggs, soft pasta (not Al Dente), deli meats, steak, chicken, vegetables and many fruits. These in-between textures are difficult for the children that present with a hyper-sensitivity feeding issue. So…to re-cap….children with Down Syndrome typically present with a hypersensitivity concern….and this concern is specifically related to their ability to tolerate the mixed textures and the in-between textures. They typically prefer harder crunchier foods….be sure though to follow the chewing heirarchy (which I will speak about)….you are following the chewing heirarchy so that you can teach chewing…..and doing the chewing exercises to help your little one with chewing.

Children with Down Syndrome and oral motor feeding sensitivities typically do NOT have a sensitivity to the Stage 1 foods and foods that do not require ANY chewing….examples of other foods besides Stage 1 foods would be and not inclusive to: applesauce, yogurt, and pudding. These textures do not require any chewing and are easily swallowed.

The next texture that can be tolerated by children with food sensitivities (in my experience)…. are hard crunchy foods. This texture needs to be first bitten with the front teeth (so children that have biting issues…a different concern…may have difficulty with this texture)….next lateralized to the side…. then chewed and swallowed. Examples of a solid texture include: cookie, cracker, pretzel, Veggie Sticks….and are not limited to these foods.

So to go back to children with Down Syndrome…they are hypersensitive to texture….so they may prefer hard crunchy foods (this food does require biting and chewing…however is comprised of one texture) and a texture like a Stage 1 that does NOT require chewing. However, children with Down Syndrome have a difficult time…due to hypersensitivity to mixed textures like a Stage 3 baby food and the in-between textures. Other foods…in my experience…that that may be difficult for these little ones include…and are not limited to the following: oatmeal (similar to a Stage 3 food), soft cheeses, bananas and soft fruits, deli meats, eggs, soft pasta (easier time with Al Dente), vegetables…..and other foods that are NOT hard and crunchy…however still require some biting with front teeth, lateralizing and chewing.

My oldest son had feeding issues and he was hypersensitive to textures…up until almost first grade….he came up with a great word to describe food that he could not tolerate: SWERBALIE. I have used that word with parents to help them understand what their little one may be thinking. For my son….he could not even look at food like a cantelope….he would gag just by the sight of it… looked to mushy to him.

My second son…Andrew…he is ten…he has hypersensitivity issues now…although he did not as a younger child. With him I try to follow the SOS approach when he is eating. When following this model….children are encouraged to try new foods….however they slowly work through the steps with new foods….the steps are (and have been modified a little for my son): LOOK, SMELL, TOUCH, TASTE. Remember children with sensitivity concerns may have difficulty with just looking at the new food….they may NOT be able to smell the new food….and for most…touching the new food is too much for their sensory neurons to handle. I have found in my experience as a therapist and as a parent…PATIENCE is the most important word.

Ok….let’s go back again to Down Syndrome feeding and the other word: hypo-sensitivity. This means that their sensory neurons need more information with regard to TASTE AND TEMPERATURE. They may like spicier, saltier or really sweet foods. This is because their sensory neurons actually need more information. I had a little one I was working with years ago and she was about two years of age…and loved sopressata…this is an Italian cured salami…and is definitely spicer. She loved sopressata….and ate it without any reservation. Some children with Down Syndrome and other feeding issues may have less of a reaction to foods that are colder or we may want to increase the temperature and make foods colder than typical to really stimulate those sensory neurons. And when doing feeding therapy we may alter the taste of the food (by increasing flavor) in order to give their sensory neurons more information.

So remember….when addressing oral motor feeding with children that have Down Syndrome and oral motor sensitivity issues….the three factors to consider: texture, temperature and taste. Finally, please note that the two factors of hypersensitivity and hyposensitivity is related to the interaction between the sensory and motor system.


I am hoping that this post in conjunction with the information I have on my Down Syndrome page is helpful to those of you that are in need of information regarding Down Syndrome feeding. This post is specifically in reference to tongue protrusion and how you can reduce tongue protrusion and improve tongue retraction in children with Down Syndrome.

Using a Playtex Nurser Bottle

…the kind with the drop-ins….is the bottle to use when feeding your baby with Down syndrome.. It is important to note that when feeding your little one….you also have to be sure to adhere to the following:

1. Baby should be fed in more of an upright position with chin down…..chin should be lower than the ears. Most of us…..when feeding our little ones….feed her in more of a cradled position….with her head tilted back… this position her chin is higher up than her ears. We do not want that position… sure that your little one’s head has her chin down….ears should be higher up than chin.

2. Slow to medium flow nipple….not the fast flow. Now….if your little one has some cardiac concerns…the slow flow nipple may be too difficult for her…in the sense that she may take a longer period of time to drink the bottle…because the nipple is slow flow. My experience has been that when a little one has cardiac concerns….and she is using a slow flow nipple….she really is working extra hard to drink the formula or breast milk….and if it is too difficult for her…and she is working too hard….she may be burning more calories than she is getting. So be sure to consult with your speech and language pathologist and your little one’s pediatrician with regard to the type of nipple.

The fast flow nipples….are just too fast….and the muscles in your little one’s mouth are not getting enough of a “work out”. We want to strengthen the muscles of the cheeks, lips and the tongue….and encourage tongue retraction.

3. Using the Playtex Nurser….in the chin down position: The first step is to remove all of the air from the bottle and nipple…..and next present the bottle to your little one. The correct presentation: the bottle should be in a downward position…by this I mean that the bottom of the bottle is down…and the bottom of the bottle is lower than the top of the bottle ( a downward angle). Typically when we feed babies…the baby is in that cradled position…with head back…and the bottom of the bottle is higher up in the air…so the bottle is angled up. I want the bottle angled down.

4.You may initially need to push some of the formula or breast milk into your little one’s mouth…so she understands that she needs to really suck in order to obtain the liquid. When feeding your little one with Down Syndrome…with this bottle and in the above position…you are forcing her to use tongue retraction in order to suck the liquid out of the bottle. When drinking a bottle the typical way….the tongue protrudes during sucking. If we feed your baby in the above position with the Playtex Nurser she will use tongue retraction….as well as strengthening the muscles of the lips, cheeks and tongue. It may take her a little bit of practice…but she will get it!



When your little one is ready for a sippy cup…..DO NOT use the sippy cups that have the inserts…these promote tongue protrusion. I love the Honey Bear Sippy cup….which you can find on the above web-site. Your little one will have to retract her tongue just as she did with the Playtex Nurser. The Honey Bear Sippy cup is great for all kids…not just kids with Down Syndrome… be sure to try this with your little one. I have had little ones at four…five and six month of age (with Down Syndrome)…using the Honey Bear.