Friday, August 26, 2011

A Cure for Down Syndrome . . . a mothers thoughts.

Many people have asked me what I would do if there were a cure for Down Syndrome. It's been the topic of many discussions on various message boards for parents of children with DS, it's something I've thought about . . . a lot.

Let me not even get started on my feelings that perhaps DS is not something that should/can be cured or the moral and ethical debates that have been going around. Let me just concentrate on this mythical world in which there was a cure for DS, would I give it to Seth?

In one simple word - no. And this might be the most selfish blog post I write to date but the answer is no. Why? Why wouldn't I want to cure my child of this "affliction", this thing that affects him cognitively, developmentally, and physically??? What is so wrong with me that I wouldn't want the best for my child?? I'll tell you why. . . in all honestly and all coming straight from my heart.

Before I do that though, there is something you should all know about Down Syndrome. Down Syndrome is genetic. Okay, here it goes, I am going to give you all a biology lesson. Genetic does not, does NOT, equal hereditary. There is a difference. Something that is genetic affects your genes and it CAN be hereditary (hereditary meaning it is passed on from parent to child), but it also may not be hereditary. So Down Syndrome is genetic because it affects our chromosomes, our genetic material, as in someone with DS has 47 chromosomes, an extra chromosome number 21, but most cases of DS are NOT hereditary. There is a form of DS that is hereditary but it is very rare. So next time you go to ask someone who has a child with DS if DS runs in the family, just don't. Don't do it. It makes you look ignorant.

Okay so what does Down Syndrome being genetic have anything to do with me not willing to give Seth a cure. Well think about it. Think about it hard. Our genetics, all those bits and pieces of information written on our chromosomes, they make up who we are from our hair color to our characteristics, basically our physical and spiritual beings are determined by our chromosomes. By spiritual I'm more talking about our personalities. Our chromosomes hold everything we are and can be.

I love Seth. I love everything he is. I love his big blue eyes, his dirty blond hair, his sense of humor, his laugh, his nose, the lines across his palms, his toes, the sound of his voice, I mean I love this person so much. And I see so much of me and Drew in him, I do. So how would I know, how do I know how much of his personality or physical characteristics are determined by the one extra chromosome?? That one chromosome has the ability to hold so much genetic material. What does it affect? If Seth didn't have DS would he have the same smile? Would he have blue eyes? Would he be Seth?? I don't know. It's not something I ready and willing to give up.

I don't find it right to change who Seth inherently is just to "cure" DS. I don't think Down Syndrome can be cured for this very reason in fact. How are they (meaning scientists) possibly going to extricate all of the genetic material that causes the "negative" aspects of DS while still leaving the same human being with the same personality and physical appearance?? And even if they can do all of that, isn't part of life and our character made up of all the struggles that we go through? I mean Seth is who he is also because of his life experiences, all the hard work that he puts in to learn and grow.

I guess the real question is, would Seth be Seth without Down Syndrome? And the answer is no. It just is.

And once I realized all of this, that I wouldn't ever give up Seth if it meant changing who he inherently is, I realized that I have fully accepted him, DS and all. Because while I may say that Seth has DS, that's not entirely true. Seth doesn't just have DS, it is a part of him, it is part of him that makes him who he is. I can't deny that. And in trying to deny that I've been denying all of who he is. He's Seth and he is made up of all that genetic material on all those chromosomes, all 47 of them.

And there's a saying that I have always had. Down Syndrome means 47 pieces to love instead of 46, isn't more love better?

I'm in love with all 47 pieces of my son.

Wednesday, August 24, 2011

A Taste of Victory

My victory to be clear. My very own personal success. I'm proud of Seth and all he has done but I think as moms we sometimes downplay our roles, our struggles and yes, even our successes, our little victories. So here is my not so little victory, something I've been working for, struggling for, for a very long time.

Last week I found out that I passed the last of three teaching certification exams. I did it. I passed them all, I did well, I can move on and do more with my life now, I can complete that part of me that says, "life isn't only about being a mom". And for those who know me, those who have known me, my biggest struggle with being a mom, especially one to a child that has special needs, is that I don't only want to be a mom, I don't want my whole world to revolve around this child, it's just not for me. Some women are fulfilled by motherhood, and in a way I am too, but not completely, not really. I need more, I want more. I love going out each day and working and learning and growing as my very own person, independent from our little family.

Okay so some of you are going to say "So what so you passed three silly tests, what of it?" Well no I didn't just pass three silly tests, don't you dare trivialize my moment here!! See when I found out I was pregnant with Seth I had one year left of college. One year. But when you are going to become a teacher that one year isn't just one year of classes, oh no it wouldn't be that simple for me, it's one year of classes and student teaching. A whole year of teaching which you do not get paid for in any way, shape or form. Your're lucky if your cooperating teacher is even nice to you and thanks you for the help at the end. So here was my day, everyday for a whole year with Seth.

6am : Wake up, get dressed. No shower, I always showered the night before, no time for showers in these mornings!
6:30: Wake Seth up, give him his Synthroid, get him dressed.
6:45: Pack a 25lb Seth in the Ergo baby carrier while I was wearing dress clothing and carrying a 10lb bag full of lesson plans and textbooks for my classes.
7am: First bus. Notice I said first.
7:20: Second bus, feed Seth a banana or something equally nutritional on the bus for breakfast. Feel lucky if I got a seat, otherwise all of this is happening standing up.
8am: Drop Seth off at my college Early Childhood Center.
8:05 Run across campus to catch the bus to the school that I was student teaching in.
8:40: Arrive at school and start teaching for the day.
12pm: On Mondays and Wednesdays I would rush back to campus for my class. It was a great class, really enjoyed it.
2:45: Pick Seth up from daycare.
4pm: Arrive home.
5pm: On Tuesdays and Thursdays I would rush back to campus for my night classes. Yes I said it, night classes. Not one, two of them.
10pm: Home again. Dinner.
11pm: Lesson plans.
12-1am: Homework, essays, journals, all that jazz.
1am: Pass out on the couch from exhaustion after taking a shower.

Sundays I had class as well for those naysayers who said I had the weekends free. WHAT WEEKENDS???? Oh and not just one class on Sunday, two. Two Sunday classes. Oh joy.

So there it is. I physically and mentally and emotionally wore myself out for a year. I never thought I could do it. I can't even tell you about the times that Seth got sick or we both caught pneumonia and Seth was hospitalized or the fact that we managed to do a sleep study and a bronchoscopy and still make it to all of his doctors appointments. It's all a blur. It really is. Add in all the therapies and holidays and . . . well it's not something I ever want to do again.

But the point is. . . I did it. I did. I carried a 25lb kid who still wasn't walking - my back protests now, it didn't then, I don't think I gave it a chance to, I would have probably sucked it up and still went on. The only time I faltered was the pneumonia, I called out for a week and rested up.

I couldn't tell you what my house looked like, what we ate, how I ever did laundry or went shopping or any other that. I truly don't know.

I know one thing though . . . I was victorious!!!!!!!!!!!

Sunday, August 21, 2011

It's here!!!!!

Well I don't really know if it is today, what day it happened exactly, but I do know that one day around this time four years ago, around the 20's of August, I found out Seth had Down Syndrome.

I can recall everything that happened from the moment that I got the phone call but I couldn't tell you what I was doing before it, couldn't tell you what I did that particular day. Was I happy that day? Was I thinking about getting the call? Was I thinking about Seth in a positive manner or was I depressed that he might have DS? No clue. I can't tell you what the exact date was either, I really wish I remembered but it all flew out the window in that one moment. I'm not the sort of person to write dates down, not the one to say that my son took his first step on this date (yeah I don't know that either for Seth) or that he crawled this date. I give roundabouts. Like Seth took his first steps around 18 months . . . that's the sort of person I am. The same goes for diagnosis day.

Well this post isn't to bring you down (pun!) about all of the negative shit I was feeling that day. It's actually somewhat the opposite. Why you ask? Was the diagnosis not depressing? Let me tell you it was the worse news I had ever gotten up until that point in my life (worse news came later but that is another post entirely). It was devastating. But that episode of my life is over. It's done with. For three years after that diagnosis I was saddened around diagnosis day. I'm not there this year. This year I'm at peace, this year we hit normal. We found our stride as a family, our little family that has struggled so much has found happiness. We are happy. We are many other things . . . but mostly we are happy.

Do you know those moments in your life where you either man up or are reduced to rubble? Those moments that change the very fabric of who you are and what your life is? Diagnosis day was that moment for me. It became a declaration of the type of person I am, the type of mom I was going to be, the type of woman that I wanted to be. I'm not going to lie, I was weak, the thought of termination crossed my mind, it did. I'm not going to be saintly here and say that termination wasn't an option, it was. Deep down inside I couldn't though, because I did my research and I knew that DS wasn't a death sentence, that it came with it's downs (ha I love that pun for some reason!) but it had so many ups as well.

So I became that person, that mom, the mom that said "Yes I'm going to have you and I'm going to fight for you and I'm going to love you . . . . no matter what." Fuck the DS, fuck the doctors, fuck the ignorant family members, fuck the insensitive friends . . . welcome Seth. Welcome to our family, just the three of us. And I knew, I knew from that moment onward that while we weren't the most perfect family and while there would be obstacles, we had each other. Just the three of us.

So what type of woman was I? Scared, excited to meet Seth, worried, fearful, determined, ignorant.

What type of woman did I want to be? Strong . . . that about sums it up. I wanted to be someone who didn't crack under the pressure, who pushed the tears away and dug out the smiles, who lived life in a shell of protection.

What type of person am I today? Knowledgeable. Strength is overrated sometimes. I do know that a lot of people tell me that I'm strong because I'm Seth's mother, I don't think so. I just think I'm more informed. I do the best for him because I'm knowledgeable about it. I know all about the therapies, all about the medical issues, everything I need to know to help Seth grow and learn and develop into a wonderful man someday. If I don't know something I look it up or ask a friend or post on a message board . . . I find that answer. Knowledge is power in my world.

I was strong for a while . . . or so I pretended to be. Because let's face it . . . no one is that strong. We are all made of flesh and bone and my heart breaks just as easily as yours does. My smiles falter, the walls fall down in a rush of tears and I'm left being no stronger than the next person. So I let the tears fall when they need to and I smile real smiles when I'm happy. I let myself feel . . . that's the most important part of this whole process, learning that I can't control my feelings, but that I have to let myself feel what I need to feel.

Sadness has become fleeting nowadays because there is so much Seth has done, is doing and will be doing in the future. There is so much hope. There is so much laughter. There are so many smiles and "I love yous" and sticky kisses and squeezing hugs. I love it. I love our little family.

Happy Diagnosis Day Seth!!! Here is what Seth can do:

sign over 100 words!!!
eat with a fork and spoon with little spillage!!
drink out of an open cup!!!
blow bubbles!!!!
verbalize about 50 words!!!!
throw a ball!!!
help put his shirt on!!!!!
stack 7 blocks!!!
finish a 3 piece puzzle!!!
wash his hair and body!!
name all of his body parts!!!
help mommy vacuum the rug!!
put his toys away (sometimes)!!!!
swing on a big boy swing at the park!!!!

These are some of Seth's favorite things:

Signing Times
coloring (favorite color is purple)
Fresh Beat Band

He truly is an awesome person. He's our little buddy. We love him and we hope you love him too!

Monday, August 15, 2011

The Ipad

Such a simple title. The Ipad. Sounds epic. Yeah I'm a geek, the word epic means a lot to me. So I conveniently forgot to add the Ipad to my list of Mommy must haves. Why? For one it's not a must have, it's just a really "I want that so bad and it's so cool and my child will benefit from it" have.

So why the Ipad? Where did I hear about it? Why did I get one for Seth? Well last year around this time Seth's OT (Occupation Therapist) got an Ipad for her birthday. She decided to download some kid apps for her child for when he was bored in the car or at the doctors office. Then one day she brought it to my house for therapy for Seth. And we were never the same.

How did Seth respond to the Ipad? He responded like it was the greatest thing in the world. He looked at it like it was so cool and he was able to use it because he just had to touch it. And what kid doesn't know how to touch valuable, expensive breakables???? Kids are masters at doing that!! So am I - I'm quite the klutz. I break plastic for goodness sake.

So here is the first app Seth ever used on the amazing day last year when we saw that he loved the Ipad, sitting with his therapist so quietly. It's this one:

Fish School - such a cute app. Really it is. I mean the fish form letters and numbers and then they sing the ABC's and they form shapes as well. Then you could play this awesome matching game (not that I've played with it....ok I have - so much fun!!!) and so much more. In fact all of the apps by the developer DuckDuckMoose are absolutely amazing and awesome and I can't think of another "a" adjective to make that flow more smoothly. It's just good fun and kids learn from them.

So what therapeutic value does the Ipad have for kids with special needs? Well to be truthful I know and you know that I love my son but his fine motor skills suck (sorry buddy). Seth's fine motor skills are horrible. It took him forever to clap his hands, to point at things, to use pop beads, to thread a bead, to color, to eat using utensils . . . you get the point. It's one area that Seth really needed the extra help in. And the Ipad is great for fine motor skills. Most of the items that have to be touched need to be touched with a pointer finger or touched and then dragged, this works on the fine motor muscles/skill. Some apps require more than one finger to be used, or you can use lots of fingers all over the screen at a time. It's cool.

Another therapeutic use is for kids who are nonverbal or who may never become verbal. We all don't want to think of that but there are kids with DS or Autism and other special needs that never become verbal. Well instead of a bulky communication device, there are many apps on the Ipad that a child can touch a finger on the picture of what they want or can even go through many different pictures to make a sentence to express what they want. The up side to this is that an Ipad is more socially acceptable than those big clunky machines that they use for communication devices. Lots of people have Ipads and lots of kids use them now. So there is no social stigma if your kid is using the Ipad in public.

One of these apps for communication is Proloquo2Go. In fact during my research of apps this seems to be the best app for communication. Here is their website: It is an extremely pricey app and the Ipad itself is pricey but here is the thing . . . if your kid is nonverbal and needs an Ipad and communication apps, well many schools and EI and other places are providing Ipads for kids with special needs. Google and search for what's in your area, to see what you can do for your kid. It never hurts to try.

How does the Ipad make my life easier?? The biggest way the Ipad has made my life easier is for doctors appointments. Anyone who has a child with special needs understands how many different doctors we go to at any given time of year. Also how many ER trips or hospital stays . . there is only so much television and so many books and toys and snacks before kids get bored. That's when you break out the Ipad. In fact when we are in the waiting room at the doctors office and have the Ipad out there is a circle of kids surrounding us. Kids love it. They gravitate towards the Ipad. It also makes Seth the cool kid while he shows off his Ipad skills.

So now here comes the fun part, my list of apps, apps that I love, well that I love for Seth. Screw it I love them too!! I do, I play with Seth's apps, they are fun!! When we first bought the Ipad for Seth my SO and I used to fight over the Ipad when Seth went to bed. We learned to take turns . . . eventually. The first few are from DuckDuckMoose.

Fish School
Musical Me!
Old MacDonald
Wheels on the Bus
Itsy Bitsy Spider
Baa Baa Black Sheep
Park Math
Word Wagon
Tap Tap Baby
First Words Deluxe
My Very First App
Peepers I say you say
Learn to Talk
Danny the Dragon
Dem Bones
Signing Times apps- there are two
Peeka Ocean
Juno Music
Interactive Alphabet
Verbs With Milo
The ABC Song
Tap To Talk
Artik Pix
In My Dreams
Doodle Buddy
ABA Flash Cards- ok there are a lot of them and they are all free- love these!!!

There are tons more. . . you have to do your research and see what you think will catch your child's interest. We have sign language apps since Seth loves ASL, we have free fireworks apps that Seth likes to just touch and watch the fireworks go off . . . there are tons of free apps out there for kids and for adults.

So I'm not telling you to buy an Ipad or to get all of these apps, I'm just telling you how the Ipad worked for us and our lives. It helps us, it helps Seth and he loves it. And I love it too. I love my Ipad, I'm on it now, while I'm on the main computer typing this post. I'm playing Escape from Monkey Island on it. . . good fun!!!!

Wednesday, August 10, 2011

Oral Motor Therapy

So sorry about not having blogged for a bit. I've had back pain, the stomach flu and Seth is blessed with a cold that leaves snot trails down his nose. Yeah it's like that in my house right now. It's like a diseased, festering wound. Where is the fuckin Lysol in this place???

Warning this is a very long post, very interesting, very educational, very necessary, but very long.

Okay so on to my topic, oral motor therapy. In my very own biased opinion oral motor therapy is the most important therapy along with speech and feeding therapy for children with Down Syndrome. Why? Well the first time you meet someone you assess them. You assess how they look by what they are wearing, their hairstyle, their weight, their gender, their race . . . yes I hate that we do it but we all do. We see with our eyes first. The thing is I have control (for the most part) over what I look like. I can dress nicely, fix my hair up, wear some makeup . . you get the point.

Then comes speech. You judge a persons intelligence on what comes out of their mouth. You just do. Imagine meeting a very nicely dressed adult and not understanding a word that comes out of their mouth. Or they curse a lot. (Sort of like me) Or they use slang or speak Ebonics . . . you get the point. Your impression of that nicely dressed person changes.

Well I want Seth to be able to give people a great first impression. I always dress him in clean, nice clothing and his hair is always presentable, he is never dirty. I think that stereo typically people think children with special needs are not attractive or are unkempt and I want to dismantle that idea. Seth is a very handsome child and I always try to have him looking his best.

Speech is a crucial part of our lives, Seth can't use sign language forever. So it all starts with oral motor therapy. What is oral motor therapy? What does it consist of? How does speech work? These are all very important questions to ask when thinking about speech development.

Oral motor therapy: The use of specialized exercises designed to improve and maintain the strength and coordination of the tongue, lip and jaw muscles. (Yes I shamelessly copied that from another website because it succinctly defined oral motor therapy.)

What kinds of oral motor therapy are there? What does it consist of?

Chewy Tubes:

Chewy tubes work on the jaw muscles. The TalkTools chewy tubes come in a set of four, in differing hardness levels ranging from soft to hard. The basic premise is that you have your child start with the easiest chewy tube (TalkTools yellow I believe) and try to have your child chew down on it ten times on each side of the mouth. Only use the softest one until your child masters it, meaning your child can do three reps of ten times on each side of the mouth. Yes this will take a while but it's all about building that jaw strength. You then move on to the next color/hardness level but you do not stop using the first one, you do ten chews on each side of the first one, then continue on with the next, once your child masters the next you add the other in the cycle. When your child masters them all they may be given them just to chew on randomly. Seth loves to chew on them randomly still to this day. (Yes he mastered them!!)

Ways to get your child to use chewy tubes: Yeah it's hard to make our children chew, well any child, if they don't want to. My solution? PEANUT BUTTER!!! Seth loves food and peanut butter on those damn chewy tubes works!! Pick something your child likes, something sticky or gooey. Shit we used Nutella as well. Fuck it. . anything that works. Food is a bribe in my house for therapy reasons. How do you think we got him to sign "more"? (Cookies!!) LOL.

Nuk Brush

This is a Nuk Brush:

It looks like a baby toothbrush. It's a brush for the inside of the mouth. I started young with Seth, about 6 months old, I can't really remember. I still have them, they are available on Ebay and other places and are relatively cheap. So what do you do with this thing?? You brush. All along the inside of their mouths. In Seth's younger days he loved this!! Why? TEETHING!! It felt good, he even used it on himself. Brushing does two things, two really important things. First it stimulates the muscles on the inside of the mouth like the inside cheek and it the inside parts by the lips. Secondly it is a prevention against oral aversion. A child that is exposed to massage and having someone/something inside of their mouth is less likely to have an aversion. A lot of kids with DS have oral aversion and can't stand having their mouths touched or eat different textures. We never had this problem with Seth and we were religious about brushing. We brushed the inside of his mouth 3x/day before the chewy tubes and then he would eat his meal.

So it went Nuk brush, chewy tubes, meal. There's a method to this madness. The Nuk brush was a more gentle way to get into his mouth, kind of preparing his mouth for the chewing, waking his mouth up. Then the chewy tubes to work on his chewing. Then he would eat and work more on chewing and he would have the best tone of the day because we just did the exercises so he was eating/chewing better and was more able to try new/different textures of food.

Straws/straw cups

Seth started drinking from a straw at 10 months old. Why is a straw so important?? Well quite a few reasons. Can you stick out your tongue when drinking from a straw?? Try it. Do it now. No you can't. So it helps with our kiddos tongue thrust because the tongue is forced back when straw drinking. Look at yourself in a mirror when drinking from a straw. How are your lips shaped?? Your lips do a lot of work drinking out of straw. They have to form a seal around the straw so that no liquid can escape. How about sucking? You have to suck on a straw to get the liquid right? This helps our kiddos sucking reflex. Look at your cheek muscles when you suck on a straw? What are they doing?? They are doing a lot of work.

Straw drinking is like an instant oral motor exercise for our kids. It works so many muscles. Plus do your really want to have the 3 year old with the big bottle of juice?? No. No one does. Seth didn't master the straw until 13 months old but I've seen younger kids master it much earlier. Throw out those bottles. . . do it. It's a great change. And you know what? Straws are so convenient. I just buy a bottle of juice at the store and stick a straw in it. No special cups (I do have straw cups for Seth at home) but out and about all I do is throw some straws in my bag or a juice-box. It makes life easier.

Facial massage

Yeah it doesn't get more straightforward than this. It's simple. Facial massage. Massage your child's face a couple of times a day. They love it. Children love to be touched and massaged and held and it's just a great way to bond with your child. Yeah it's a bit weird in the beginning but you will get used to and so will your child. It's the cheapest too because your hands don't cost a damn thing. But there is a method to the madness. Start at the tops of the cheeks and massage down towards the mouth. Massage at the top of the sides of the nose down towards the mouth. Massage the upper lip down towards the mouth. You see a pattern here right?? Massage towards the mouth. When massaging by the chin massage up . . . towards the mouth. All the massage goes towards the mouth. Ok I think you all got that now. I did the massage before the Nuk brush. If it seems like way too much for your child, and it is in the beginning, do it at other random times during the day.

Fun oral motor tools:

Vibrating teethers

We had this one:

Kids love to chew on it and it vibrates so it works for jaw strength and to stimulate the inside of the mouth. Good job whomever invented this thing!! And they are cheap. Cheap is always good for me. It's one of my mottos!


Now a lot of children aren't going to be able to blow bubbles to a bit older, Seth still struggles with this at 3 1/2, he is like 50/50 with bubble blowing. But who cares because he tries and he loves bubbles. It helps with the "O" lips as I call them. It also helps with lung capacity and inhaling and exhaling. It's great, it's cheap, it's fun and I don't know one child that doesn't just love bubbles.


There are some specialized horns made just for this, for oral motor therapy, screw them. Pick up a cheap recorder or horn from the dollar store, believe me they are going to chew them to heck and they will eventually be destroyed. Your child can practice sealing their lips around the end and blowing air into them. Same kind of concept as blowing bubbles except this is a bit easier. So it's a beginner oral motor tool.


Oh yea I went there. I brought out the candy. Lolipops . . why you may ask? Licking!! Tongue control!!! Chewing on the hard candy and trying their best to get some of it. It works!! Mostly it's good for licking though!!! Is a lollipop going to kill your kid . . no . . . so get over it and give the damn kid a lollipop. It took me a while to process this one as well. I like these lollipops because I'm anal and always feel like my child might fall and choke on his lollipop:

And the little loop is also good because Seth now has a super human hold on his candy. It's almost impossible to pry out of his sticky, grubby hands!!

There is a great article on the Talk Tools website. It's called The Oral Motor Myths of Down Syndrome. Google it. First result.

Basically here is the run through. It's a long run through but it's totally worth reading.

Kids with Down Syndrome have a high palate. The thing the you hit with your tongue at the top of your mouth - that's your palate.

Kids with DS have larger tongues than typical kids.

Kids with DS are mouth breathers.

Kids with DS have tongue protrusion.

Kids with DS are prone to ear infections/hearing loss.

All of this issues, well people with DS aren't born with these issues. People with DS are born with one thing in common, besides the 47 chromosome thing. . . low muscle tone. And low muscle tone is the reason for each one of these problems and I'm going to tell you why, starting from the top of the list.

Kids with Down Syndrome have a high palate - well I learned that the palate actually forms around our tongue. If you have Down Syndrome and your tongue tends to stick out because of low tone and low ability to keep your mouth closed . . well your palate doesn't form correctly around the tongue. So now your mouth doesn't properly fit your tongue and your tongue sticks out. Good thing that the palate forms for a while, with oral motor therapy and keeping that tongue inside the palate can properly form and make room for that tongue. Boom we just knocked out the first two. So palate and tongue myths are done.

Kids with DS are mouth breathers. Well wouldn't you be too if your mouth was constantly open. Keep your mouth open and try to breath through your nose. Can you do it? I can't. Neither can your child with DS. So no they are not naturally mouth breathers, they become mouth breathers because of the low tone.

Kids with DS have tongue protrusion - we already solved that one with the whole palate issue.

Kids with DS are prone to ear infections and hearing loss. Ok the truth is going to hurt here because you can stop this from happening to your child. In fact you are probably the cause (unintentionally) of your child's ear infections. How does one feed a newborn? We lay them down in our arms and feed them, we don't think of doing it any other way. Well it's the wrong way for children with DS. WRONG I TELL YOU. Why? Well when we drink there is a little muscle in our ear that closes so fluid doesn't get in there. Swallow and see how your ears feel. If you have low muscle tone is that little muscle closing properly? Is fluid getting in?

The solution: Feed your child in an upright position where the ears are above the mouth at all times. Chronic ear infections lead to hearing loss. Some kids don't even have symptoms of fluid in the ear or ear infections or hearing loss. And how do we learn how to speak?? Through hearing. We learn how to speak through proper hearing of articulation of words and sounds, none of which is possible with fluid buildup in ears. Seth recently had ear tubes done, I didn't know that he had fluid in his ears until after the surgery. What happened a month after that surgery? A speech explosion. So much speech (I'm crying here). There is nothing like knowing that you possibly fucked up your child's speech by not knowing about an important medical issue. So get your child's ears checked out frequently!

There is more but you have to read the article.

Ok I'm done here. With all my heart I hope this post helps a couple of moms who are lost in the world of oral motor therapy. I know I was once, about 3 years back. I'm so glad I had knowledgeable people who were there for me, I hope I can be that for all of you.

Tuesday, August 2, 2011

Mommy must haves for children with Down Syndrome

I've often been asked what items/products I absolutely could not have lived without, what helped Seth progress/eat/drink/play/build muscle tone, etc. Basically what worked for us . . . and tons of shit that just didn't. We went through a lot of products to find those that were perfect for Seth, things that functioned for our lives and needs.

There are a lot of products that are universally great for DS in general because let's face it . . our kiddos have a lot of the same needs. So I will address these needs and products I used for our lives. If you have any questions about other products or if I leave something out . . . well just ask in the comments section.

Oh and just to clarify . . . cause I have to be a smartass about this . . . I'm not getting paid to endorse these products. . this is just to help other moms. These are products that we use/have used.

Bottles that are easy to use for kids with poor suck reflex:

As I wrote in the last post, Seth had tons of issues feeding. These bottles helped. Not only were the nipples good for him to latch on, the drop-ins aided in him not ingesting as much air and getting as. In fact Seth never had an issue with gas as an infant. There are different nipples with varying degrees of difficulty so you can upgrade as your child gets older. Also they don't require cleaning!!!! Drop-ins!!! Fuck it all . . .that itself is worth my money. Do you know how much time I saved not scrubbing bottles??? Do you know how easy it was to pre-make bottles with the drop-ins and just add water as needed. It's so easy to use. It made my life with a newborn so simple. As a first time mom I think that's worth it. Also the drop-ins are pretty cheap and you can buy the generic brand drop-ins because it's the same damn thing.

To help your very wobbly low tone child to sit up:

The Bumbo Seat!!!!

I loved this seat for Seth. We bought ours off Ebay for very cheap. Hello!! Buy used stuff on Ebay. We are not millionaires, we like Ebay, I think I live on Ebay some days. Craigslist is good too. Plus your child is not going to use it for that long anyways. Seth started neck/head control at around four/five months old. He didn't have the strength to hold up his big noggin that long and this chair REALLY helped. It was great when we started rice cereal too. Seth was too small for a highchair and we wanted something on the ground for safety reasons. So the Bumbo seat is awesome. Oh and get the tray with it. It's worth it!!

To increase oral motor skills:


Ok I'm going to say it and say that I'm probably a chewy tubes snob. There are tons of websites selling these now but I'd go with TalkTools. Pricey . . yes . . worth it . . HELL YES. So our kiddos have trouble with oral motor skills because of low muscle tone. These chewy tubes build oral motor tone/skills and feeding skills by teaching them to chew. It will improve mouth closure, it will improve speech. It makes a difference. That's it tomorrow I'm going to write a whole post about oral motor therapy because it is, IMO, the single most important thing you can do for your child with DS. But believe me, you want these chewy tubes. That and the honey bear straw cup to start straw drinking. More on straw drinking tomorrow. Please visit the Talk Tools website and read their articles. Sarah Rosenfield Johnson is amazing and her program works. (Ok now I sound like an infomercial-sorry!)

For language/sign language


Ok so everyone knows I love Rachel Coleman. If you are going to do sign language with your child, Down Syndrome or not, this is the way to do it. She sings and signs and teaches them so easily that I learned from her. I now know over 200 signs, can sign the alphabet, about ten of her songs and can count to ten . . . all in sign language. Seth is 3 1/2 and can sign over 100 words, strings signs and words together and can sign the alphabet. He is currently working on signing his numbers as well.

Seth's biggest area of struggle is language, speech in particular. He understands everything that is said to him but he can't always let us know that. Sign language gave him a way to talk to us when words weren't coming. It's emotional for me because every mother wants to hear their child speak but that isn't always possible. (teary-eyed at my comp now!) Signing Times was/is a great tool. Seth loves all of the DVD's. I'm not a huge fan of the Baby Signing Times ones, we stick with the regular ones. Now I know not every mom of a child with DS does sign language, it's a choice. I'm not advocating that you do or don't - that's your choice and dependent on your child's needs. But if you do . . go for Rachel Coleman.

Oh and we got to meet her at the NYC Buddy Walk last year and are seeing her again this year!!! Here's a pic:

That picture is awesome. Ok moving on. . .

Sensory Balls (sounds a bit dirty!)

They are fun, they are cheap, they provide tactile sensation for our kiddos. I love them!! Plus one of Seth's favorite things are balls. These are all easier to grasp. They provide great sensory input for kids that need it. I think I will do a post about sensory input as well. Oh so much to say and so little space to say it . . .

Rifton Chair

Now I know what you are thinking . . it's pricey and it looks strange. This is a Rifton toddler chair. We got ours through EI because Seth needed it for feeding. Tomorrow I will write more about the whole oral motor thing but basically to work on oral motor skills our kids need to be in a supportive chair that holds them up. This is the chair that works for us. Something like this that can strap on to a regular kitchen chair, something with a seat-belt and a footrest for your child, that will work as well. If you can, like me, try to get EI to pay for it. Remember again, we aren't millionaires, just regular parents who have kids that need special things.

A rocker/rocking chair or horse or something to that extent. Here is what we have:

It's from Ikea, it's $10, and I know it looks weird but Seth LOVES it. It provides vestibular sensory input. Ok my computer is telling me vestibular isn't a word but it is. Damn that red line under the word. Vestibular input is gained through stuff like swinging or rocking or spinning, basically anything that has to do with moving the head/inner ear/visual and auditory. I feel like I'm explaining it poorly but I can't exactly put it into words.

So Seth, I noticed, craves vestibular sensation. That's the type of child he is. We had some issues with him rocking/head banging and I used to hold him and rock him but I needed something better. This little rocking thing is it. He can go on it, rock and he loves it. It's healthy. It's much better than having that child that head bangs and rocks back and forth all day. There is no way to derail certain behaviors but I try to find more socially acceptable ways for Seth to get what the sensory input he craves.

A good, sturdy straw cup with replaceable straws:

We use these cups from Munchkin. I love them. The leak a little but overall they are very good. They have a valve which makes Seth work his oral muscles to get the drink which is good for oral motor therapy. They also have replaceable straws. No more buying 30093458 cups. Seth chews through straws, clean through. He's the straw chewing kid. I guess it feels good with all those chompers he has in his mouth. So I like the fact that I can replace chewed straws or even straws from the cups that rolled under the couch and now have about 5 days of milk buildup that is impossible to clean. (ewww I know but it has happened, I'm so real here it's scary) No worries - new straws!!!

A good wooden push toy for walking skills/support:

We used this one from Melissa and Doug. I love Melissa and Doug toys but they are pricey. Again I'll reiterate . . EBAY. Love Ebay so much. So we purchased this off Ebay. We used it inside and outside on concrete. It's seen a lot of time but it's still doing good. In fact we are giving it away to a friend in need. . . sorry Jennifer I forgot to bring it to your house again!! Next time! Another little boy will get the chance to use this great toy. It's so fun. The alligators open and close their mouths as you push it . . . ok so I like kiddy toys . . I'm allowed to. I also like Seth's building blocks, so much fun!!!

Ok So this post is getting long and there are more products but these have really helped. I'm going to talk about one more thing, something that every parent for every child all around the world should have for their child: a library filled with age appropriate books. I think we forget how important reading is for children. Read to your child. One book a day, two books, it only takes about ten minutes. It's great for kids to hear/see their parents read. Kids want to emulate their parents, give them a good example to follow. I'm a reader by nature, my degree is in Secondary English Education so I'm a bit biased. I love to read. I know not everyone likes to read, not everyone is me. There are millions of books out there, graphic novels, even books on electronic devices. Find something you like to read and share it with your children.