Wednesday, March 31, 2010

Best friends they are.

Just 17 months ago, our family adopted a Russian orphan. A little girl that had no family ... no mommy, daddy or siblings to call her own. 

A little girl the baby home caregivers and other orphans referred to as Nika. A little girl we named Addison.


Going into our adoption, I think the thing I was most excited about was the bond that I hoped Payton and Addison would have. Sisters ... nine months apart, both sporting an extra chromosome, best friends for life. 


When Addison came home, things were not the fairytale I had dreamed about. Payton was in love with her new sister, however the feelings were not necessarily returned. And that broke a momma's heart.


I soon came to realize that Addison had spent her life in fight or flight mode when it came to other kids. If she didn't fight for her toy, she'd lose it. If she didn't fight for the food placed in front of her, she'd lose it. That was how she coped and the last thing she wanted was her doting little momma-of-a-sister in her face all the time.

She cried. She turned her back. She wanted Payton to leave her alone.

But one day ... one day she decided it might not be so bad to have a sister that loved her. And she gave in.


Today ... they are the best of friends. Well ... most days they are.

Payton is still the doting little momma-of-a-sister that Addison does not necessarily care to have. But we work our way through Addison's tears of frustration, tell Payton to back off and we move on.




Sisters they are. Best friends they are.

Thursday, March 25, 2010

They call her Momma.

Honestly ... where does time go? I seriously can't stand the fact that life goes by so fast ... I need to know how to fix that. As much as I try to cherish the little things in life ... the big things seem to take over.

My niece has moved into her fifth week of life. It is amazing to see the transformation that just five weeks makes on a newborn baby.


Payton adores her cousin ... I love that. She is such a little momma ... she loves her babies. I'm pretty sure she thinks she is the mother of Nika too ... ya know, in light of the way she bosses her around and such.

Payton's teachers have also told me they call her "Momma" at school, because she acts like just that -- the momma! She is constantly trying to take care of the other kids and help them with what they need done. Such a kind soul.



Hello baby blue eyes.



Mason was the student of the week last week in his kindergarten class.


He is 6 years old.
His favorite animal is a dog.
His favorite color is red.
His favorite food is mac and cheese.
When he grows up, he wants to be a race car driver.
His favorite place is Disney World.
His favorite thing to do is play with friends.
If he had one wish, he would wish for a monster truck.

Love that kid.


Even when he sobs from exhaustion after a long day at school when the neighbor kid does not want to play baseball with him. Nonetheless, he is always willing to pose for the camera ... waterlogged eyes and all. 

My hazel-ish eyes turn really green when I cry ... and Mason's do too, as you can see. I wonder why that is ... too bad that color doesn't stick around absent of salt water tears.


Now if you'll excuse me, I need to go eat my pickles and ice cream. You know, because I'm pregnant. 

Kidding people ... kidding.

Tuesday, March 23, 2010

When is your baby due?

Scenario: I am sitting in the waiting room at therapy this morning, waiting for the girls to finish their speech, physical and occupational therapies. My life story. I am sitting slouched in my chair, arching my back and balancing my laptop on my lap.

Lady: When is your baby due?

Me (staring at my laptop): No baby.

Lady: Oh.

Me: *silence, staring at my laptop*

Lady: How many kids do you have?

Me: Three.

Lady: Oh, well that will stretch things out.

Me: *silence, staring at my laptop*

Lady: My body is shaped like that too.

Me: *silence, staring at my laptop*

Lady: Sorry.

Me: No worries. Seriously. I am dying here just reliving this in my head ... what was this woman thinking? She is a complete outcast and I have to sit in a waiting room with her week after week, listening to her nonsense. Be it singing at the top of her lungs, talking 999 decibels too loud or just saying the most random things ... I do not know how much more I can take!

Had I been quick on my toes, the conversation would have went like this ...

Lady: When is your baby due?

Me: November.

Lady: Aww, congratulations.

Me: Thanks ... when is your baby due?

Or ... a friend suggested this would have been even better ...

Lady: When is your baby due?

Me: Next month.

Lady: Wow, you are tiny!

Me: Yes I am!

Ha ... love it. Maybe someday I'll be quick on my toes.

Sunday, March 21, 2010

Honoring my girls

Today is the day ... World Down Syndrome Day.

Today is the day that we aim to promote awareness and understanding of Down syndrome and related issues ... and to mobilize support and recognition of the dignity, rights and well being of people with Down syndrome.

Today is the day that we honor our girls ... and all of the other fabulous people with Down syndrome in this world.  

In honor of this special day and my love for networking with other completely-inspiring-super-awesome parents of children with Down syndrome ... I present to you Real Life | Down syndrome. 

Real Life | Down syndrome is a comprehensive look into raising a child with Down syndrome ... for the parents, by the parents. In other words, it brings the stories of parents across the world to one place. It is broken down into three main categories -- birth stories, life stories and medical hurdles -- allowing parents ... no matter where they are in their journey ... to find other parents that have been in their shoes. 

Someone to identify with ... someone to contact when you have questions.

Disclaimer ... I am still perfecting text and tweaking things here and there ... I welcome your suggestions! 
  • In order to follow each of the three main categories via google reader or other feed, you must separately follow each one. Annoying, I know -- I'm sorry! That is just the way I had to set it up for now and until I have time to make it better, this will have to do.
  • The families tab will be updated as needed ... and it is far from complete as it is. So ... if you are not yet listed on the blogroll, please get me your child's name, your blog name and your blog URL so that I can add you.
  • The resources tab will also be updated as needed ... and it is also incomplete at this time. If there are any resources that you would like to see added, please let me know.
  • The birth stories, life stories and medical hurdles tabs will be updated several times per week. I need your stories! Please contact me for more specific information. 
I hope you like the website ... and again, please tell me what else you might like to see!

Friday, March 19, 2010

She marches to the beat of her own drum.

When you have a child ...


with the determination of a bull ...


there is not much success in telling her not to do something.


No matter the predicament she is bound to find herself in.


She marches to the beat of her own drum ...


and ain't nobody gonna change that.


For she is fearfully fearlessly and wonderfully made ...


and we wouldn't have it any other way.


Tuesday, March 16, 2010

Loving life.

This is my favorite time of year. Spring. It just makes me so happy and excited for what is to come. Windows are open, breezes flow, the kids play and I breathe in their happiness.

Someone else in our house is particularly fond of spring ... and the outdoor time that comes with it. Hi Zoe. If you don't stop running after everyone who walks past the house, your outdoor time will be limited. Mmmkay?


We bit the bullet at Christmas and bought Mason a pocket rocket ... he loves that thing. He has been itching to get it outside and today was the day. The kids and I went for a walk and he zoomed all around us. I'm pretty sure I sounded like a broken record -- Mason! Be careful! Don't go so fast!

He only kissed the pavement one time ... and I watched it happen in slow motion from behind. It looked painful, but in true 6-year-old fashion ... he jumped up and went back to business. Had some neighborhood kids not been looking, his reaction may have been worse.

And the broken record screeched -- I told you to slow down!


I feel like we are in the middle of an infinite speech therapy marathon. Monday - 1 hour private PROMPT therapy, 30 minute public school PROMPT therapy; Tuesday - 30 minute private speech therapy; Wednesday - day off; Thursday - 30 minute private speech therapy, 30 minute public school PROMPT therapy; and Friday - day off.

Speaking of ... I finally heard back from Payton's teacher regarding her wanting to transfer Payton off her caseload, regardless of Payton's apraxia diagnosis and regardless of the therapist's PROMPT training. Hmph. I ended up having to call the head of speech therapy within the special education department ... and of course after that I got what I wanted. 

Sort of sounds like a neener-neener-boo-boo chant, but whatever -- I should have never had to deal with this to begin with.


Have I mentioned this chick is full of attitude and sass? Hello dirty look!


Nika is Nika ... just hanging, chilling, loving life. This chick attracts people everywhere we go. She is notorious for blowing kisses when we leave places ... although I'm not sure she realizes she is really signing thank you -- and smacking her lips -- when she does so.


Her adjustment continues to be amazing ... she is like a little sponge soaking up her new world. Today Mason and I were practicing her colors with her on an iPhone app that I have ... she did great knowing the colors -- if only her fine motor skills allowed her to accurately touch each color.

After attending a meeting this evening, I went to eat because I was starving ... Baja Fresh. It was funny because I had to convince myself that it was okay for me to go take a few minutes to eat. By myself. Alone. With no children and no distractions.

Clearly I was in my own little world.

I got there at 9:02 p.m. and walked in, sort of surprised to see they were still open. I ordered my food and decided to eat it there, rather than take it to go. I deserved this time, yes? 

After about 27 minutes, I realized I was enjoying my time a little too much. I looked up to see I was the only customer there. Garbages had been emptied. Cash registers closed. The kitchen almost clean. 

They had closed two minutes before I even got there and I didn't know it. What is even more remarkable is they never said anything, they allowed me to eat my meal in peace and they went about their business. While I drooled over my chicken nachos.

Thank you Baja Fresh ... I needed that. Even if I did look like a complete dork without realizing it. I guess that probably happens way more than I realize, huh?

Monday, March 15, 2010

Delivering a diagnosis ...

This past weekend, I had the opportunity to attend a Down syndrome conference. I lurve Down syndrome conferences. I have attended several of the national conventions, but this was my first time attending a local conference. It didn't disappoint.

The day started out with J. Frank Stephens giving an amazing keynote speech. He started out telling jokes and wanted everyone to know how much he loves his life. I cried. If his speech could be shown on national television to promote awareness ... it would be a great day.

The second keynote speaker was Brian Skotko. Equally amazing. He is such a great advocate for our kids ... and his sister.

I attended three sessions, the first of which was Delivering a Diagnosis to New and Expectant Parents, by Brian Skotko.  

Dr. Skotko will present the results of his research on how physicians deliver a prenatal and postnatal diagnosis of Down syndrome. The presentation includes highlights from his publications in Pediatrics and American Journal of Obstetrics and Gynecologies and includes “take-home” recommendations on how physicians can more effectively and compassionately deliver difficult news to new and expectant parents.

I attended this session with the intent of getting more information on how to reach out to our medical community. A friend and I are taking over this task for our local group and we are trying to figure out the right way to go.

Dr. Skotko talked about the two upcoming prenatal tests for Down syndrome.
  • Allele Ratio Analysis ... Simple blood test, no risk to the fetus. Accuracy: data questioned. Eligibility: data questioned. Timing: performed as early as 12 weeks gestation. Availability: perhaps as early as this year. Cost: List price of $2,000; real cost for insurers about $700; less expensive than CVS or amniocentesis. Large-scale trial launched: 10,000 pregnant women, 30 worldwide clinical sites, results available after product made available. Limitations: not reliable for detection of translocation or mosaicism.
  • Shotgun Sequencing ... Risk: simple blood test, no risk to the fetus. Accuracy: so far, 100% sensitive, but data small sample sizes. Eligibility: 100% of the population will be eligible for the test. Timing: performed as early as 10 weeks of gestation. Availability: only in research labs right now. Cost: about $700, less expensive than CVS or amniocentesis. Advantages: possible detection of translocation or mosaicism.
The thing I thought was so interesting about the Allele Ratio Analysis is that it cannot reliably detect translocation or mosaicism. Payton has Translocation Down syndrome, so in my case ... had I had this test ... it would not have been detected.

My problem is this ... parents are going to be told that they are having bloodwork done to see if their unborn child has Trisomy 21. Are doctors then ... at that point ... going to explain the three types of Down syndrome to parents and also explain that the test will not detect translocation and mosaicism? I doubt it.

And this remains the underlying problem ... parents are not being educated to the full extent when they are presented with a prenatal diagnosis of Down syndrome. One way or another.

National guidelines have been set so that expectant mothers are able to make informed decisions. They should receive non-directive counseling, accurate information, up-to-date information and balanced information.

Yet, 81% of medical of medical students report they "are not getting any clinical training regarding individuals with Down syndrome"; 58% of medical school deans say such training is not a high priority; 45% of ACOG fellows and junior fellows rated their residency training as "barely adequate or nonexistent"; and only 28% of ACOG fellows felt "well qualified" in prenatal genetic counseling.


In June 2009, a meeting between the ACMG, ACOG, NSGC, NDSS and NDSC was held to bring medical professionals toward concurrence in understanding prenatal screening and diagnosis of Down syndrome. Recommendations were published for prenatal and postnatal diagnosis ... and now the question is -- how can we get these recommendations to our local medical professionals and will they be receptive?

What can you do?

*Tell your medical professionals about ... an interactive online simulation that asks medical professionals to view virtual patient-doctor sessions and provide responses to questions and situations.

*Take part in the First Call Program in your local community ... or start the program if it hasn't already been started.

*Reach out to medical schools -- especially genetics classes -- and those that are doing their residency ... ask to speak to them while they are still in training.

*Serve on hospital committees.

*Write letters to your obstetrician, keeping them updated on your child's life -- show them it is not all gloom.

All research review papers referenced here can be found on Dr. Skotko's website. You can also find a podcast of this session here.

    Saturday, March 13, 2010


    There is so much hatred in this world, it makes me want to throw up. Sometimes I just wish people really knew the extent that people discriminate against people with Down syndrome.

    Just to explain, a group of people who clearly have nothing better to do with their time recently stole Down syndrome advocacy posters that were posted online and amended them to their liking by way of photoshop. Each poster contained a slogan and a picture ... and when I say they amended them to their liking ... I mean it was full of hate, bashing and disrespect.

    In light of recent events, I have had several friends ask me how to watermark and protect their photos online. Technically, any photo posted online is free game and many are archived in places like Google Images.

    That said, you can protect yourself by watermarking your photos and making your copyright known. You can also code your blog to disable right and left clicking, however you need to know that you also deactivate other external links by doing so.

    And ... at the end of the day ... if someone really wants to steal your image, they can take a screen shot and crop it down to the image. Granted, it will only be as big as it appears on their screen, but they have the image like they wanted.

    How you can protect yourself ...

    *Resize your images before you upload them to the internet -- especially if you load them directly into blogger. Images that are taken straight out of a camera are hi resolution and huge. If someone clicks on your photo, they can pull up a huge, hi resolution photo to use for their liking. I recommend resizing them to the width of the space that your blog allows. For example, mine is custom set to 550 pixels wide -- so I always resize so the longest side of the image is 550 pixels. That way, if someone clicks on your image, they are getting a small photo that can't be printed much bigger with good quality.

    If you try to click on any of my more recent images, you will never be able to pull it up. This is because I load the image to flickr and then transfer part of the html code into my blog post so that just the image appears and not the ability to click back to flickr. This is one way to help protect your images.

    If you do not have photo software, you can easily resize your images on Picnik  -- a free online photo processing program.

    *Watermarking. I do not watermark my blog photos because I think they are pro quality ... far from it. I watermark them to protect them and to make someone think twice before they try to steal them. The watermark showing copyright is right there on the image -- not to say they can't still be stolen, but you have made your mark known.

    I struggle with doing this for the sake of the photo, but the best way to truly watermark your image is by doing so through the main focus of the image. That way the watermark cannot be cropped out if someone were to steal the image.

    I watermark my photos using photoshop, however Picnik has a create | text feature that allows you to apply text to your photo ... great for watermarking.

    One other thing ... I recommend noting your URL within your watermark, although you will see I have not yet added that. If someone were to see that your image had clearly been stolen and was being used in a way it was not intended, sometimes a watermark of just your blog name will not allow them to find you to tell you if they so wished. Neither will just having a copyright sign on your image. A URL, however, will allow them to easily find out where the image originated and more so, whether or not it is where it belongs online.

    *Copyright. Add a copyright statement to your blog. If you scroll to the bottom of my blog, you will find mine. Right there, for everyone to see and to protect what is on my blog.

    Those are the biggest things you can do to protect yourself, your images and the content of your blog. Hope this helps!

    Thursday, March 11, 2010

    10 things.

    1. When I was a senior in college, I won $20,000 playing dollar slots at a casino.

    2. I have a biological sister that is 10 months and 10 days younger than me, making us the same age for 50 days each year. In other words, that means my mom got pregnant when I was 1 month and 10 days old. Yikes.

    3. I speak Spanish. Sort of. I studied in Mexico my senior year of college. After I won the money to pay for the trip. Ha. I lived with families in Guadalajara and Mazatlan ... best.time.ever.

    4. I am a victim of unexplained infertility. I had four failed IUI procedures before moving on to IVF ... both of my biological kids are IVF babies.

    5. I played the clarinet in high school. Despite popular hate, I think marching bands are the coolest.thing.ever.

    6. When I was growing up, I was nicknamed "Beef" by a neighbor. I wasn't overweight, so I still am not really sure where it came from. My friends called me "Babs".

    7. I have lived in New York, Pennsylvania, Michigan, Wisconsin, Minnesota and Virginia. I get around. 

    8. I was a horrible athlete in school. I used to sprain my ankles all the time. I eventually gave up. I actually have an extra bone in my left foot and anytime my foot rolled in, the extra bone would crack.

    9. I used to be completely addicted to scrapbooking. Then I had kids. And there is no time for scrapbooking.

    10. I met my husband my freshman year in college. He hated me. He thought I was stuck up because I never really acknowledged him ... err something. Ha. Too bad we had dorm rooms right next to each other our sophomore year. Then he fell in love. Aww.

    Bonus round ...

    11. I wish I was shorter. Err ... I wish my husband was taller. Yeah, that's it. I'm 5'9" ... he is 5'8" ... unless you ask him.

    12. I secretly want a motorcycle. And a boat. I don't ask for much. Oh, and I would love to be a race car driver. Ha.

    13. I fell through ice when I was younger ... perhaps 5th or 6th grade. We had a river behind our house. I was not allowed on it ... so I went on it, naturally. I was chopping the ice with a shovel and in I went. Wow, I was smart.

    14. I have only ever had two speeding tickets. And I got both of them within one week of each other.

    15. I fell asleep driving down the interstate once. I went down through the grassy median and woke up on the other side of the highway going against traffic. I am pretty sure my heart has never pumped so hard in its life.

    Wednesday, March 10, 2010

    It makes me happy.

    Spring is in the air. And it makes me smile ... just like my favorite new song -- Smile by Uncle Kracker -- as is playing in the background. I usually am not a fan of music on blogs, but for today ... it makes me happy.

    Spring means we can play outside again. It means we can enjoy the warmish air. It means we can resume walking to Mason's bus stop, rather than driving -- the warm weather allows us to get out the door timely without having to bundle everyone up.

    And that makes the momma happy.

    Payton loves to walk her brother to the bus. She gets so excited to hang out for a few minutes with the neighborhood kids and 9 times out of 10 ... she stands in line with the rest of the kids. She is waiting for the day that she can get on the bus with her brother and all the other kids.

    I hope that day comes, baby girl. Yes ... I'm having a sentimental, poor me moment where I can only pray that she will be able to ride the regular bus when the time comes.

    But for today ... she just wanted to push her baby doll in her stroller ... and so she did.

    And I smiled. 


    Because this is the life I always wanted ... Down syndrome or not.


    It makes me happy.


    A few days ago, I went outside to find Mason standing in the driveway armed with a can of spray paint. I surveyed the area and found that he had made his mark on a Little Tykes car that we have ... and then his little sister smeared her hands through it and wiped them all over her coat.

    Graffiti tagged coats are in right now, yes?

    The next day, I noticed that I had missed some of Mason's tagging.


    Me: Mason, what is this?

    Mason: *buries head in my side* I forget.

    Me: No you don't forget.

    Mason: But I was just trying to make it colorful.

    Me: Uh huh. Get in the house ... now.


    A weekly favorite around here is pizza ... it is a bad vice, I know. Along with that typically comes boneless buffalo wings for my husband ... sometimes one for me too.

    Mason: What's that, Mommy?

    Me: Blue cheese.

    Mason: Well how come it isn't blue?

    Me: I don't know.

    Mason: It can't be blue cheese if it isn't blue.

    Don't they say that if you were stranded on a desert island, that the one food that would offer you the most food groups is pizza? See ... exactly why we love it. Mountain Dew falls in that category too, right?


    My girls. And my boy.

    My girl.


    A little over a week ago, I sat in an operating room holding my youngest daughter as she was sedated for surgery. Her tonsils and adenoids had to come out. No matter how many times I've witnessed my children be put under anesthesia ... it never gets easier.

    Surgery was a success.

    Nika was a champ.

    The crazy kid bounced back faster than a cheetah can cross a field. She and I spent the night in the hospital with the world's most dreaded roommate. For her first post-op meal, she had macaroni and cheese, peas, applesauce, ice cream and a popsicle. Perhaps I am forgetting something. I think I will enter her in a hot dog eating contest, because there is no way she wouldn't win.

    Nika + food = bliss.


    My other girl.


    My super sassy, adorably scrumptious, full of attitude oldest daughter.

    This chick is giving me a run for my money. She thinks she rules the roost and the hammer is about to come down. Problem is ... she is so damn cute that I can't help but just kiss her when she looks at me out of the corner of her eye and raises her finger as if to tell me, "No!"

    I love her sass and I can't imagine where she gets her attitude. She'll go far in life ... I just know it.

    After about five months of school, I finally was able to speak to Payton's speech therapist today ... I'm talking her school speech therapist. I have never heard from this woman and was beginning to get rather irritated.

    Our conversation was interesting, to say the least. She acknowledged that she had received the information concerning Payton's apraxia diagnosis. Yet she didn't really seem to care to address it.

    So I did.

    In the interim, she told me that she will no longer see Payton ... that, due to budget cuts ... her assistant will see her and all the other kids that get one-on-one. She -- the speech therapist -- will only be working with the kids who can handle group therapy.

    Does that seem backwards to anyone but me?

    So then I asked the magic question, "Are there any speech therapists that are PROMPT trained?" 

    She chuckled and said, "Yes. Me. And I have been using PROMPT on Payton."

    Interesting. To say the least. 

    So let me get this straight. Said child has an apraxia diagnosis and has been receiving speech therapy by a PROMPT trained therapist -- which we want and need -- and said speech therapist is going to pass her off to her assistant, so she can see higher functioning kids who can deal with group therapy. 

    Did I get that right? Because it sure as heck does not make sense to me.

    And I told her that. I'm pretty sure she completely understood what I was saying and if she didn't, I would really question her as a therapist. After I made it clear that I would fight to have her kept as Payton's therapist, she told me she would talk to her supervisor and see what could be done in a situation like this.

    The thing that makes me so angry ... is that had I not brought it up, they would have just swept it all under the rug.

    So I wait. She has until Friday to call me and if not, "Hello, Mrs. Supervisor? I have a problem that I need addressed."


    My boy.


    My baby boy ... who isn't so much a baby anymore. 

    Little dude is six and in kindergarten, but he is the size of an eight year old kid in second grade. He has struggled with his reading, letter sounds and sight words, but he is getting better as we drill them into his little head as the days go by.

    He is so obviously my kid. I'm told he is a math whiz ... that's me. I took college algebra for fun ... for easy credit. My husband ... not so much.

    Yep, that's right ... my kid. Oh, and the tall genes ... those are mine too. Sorry babe. 

    I have quickly come to realize just how grown up my boy is getting. He is currently in that awkward phase of life without any front teeth. How long does it take for those things to grow in, anyway?

    The past few weeks, Mason and I have had daily battles over Super Mario Brothers on the Wii. We seriously bicker the whole time ... loving bicker, of course.

    You made me die! You took my mushroom! Get out of your bubble! Etc etc etc.

    But I love it. He loves it.

    And these are the times that we'll remember forever.

    Monday, March 8, 2010

    But the children continued to play.

    We have been living life in the fast lane ... and we need to slow down.

    Three kids in three different schools. A broken phone. A photography business. A tonsillectomy and adnoidectomy. A baby boutique business. Two broken computers. A new venture with Juice Plus. An apraxia diagnosis. Treatment of H. pylori for three of us. A hunt for a PROMPT trained therapist. Selling a car. Four therapy sessions a week -- make that six starting next week. Treatment of ongoing skin problems for the little man. Volunteer work. And the list goes on.

    We are all tired.

    When we started this school year, Payton had to give up her afternoon naps. She definitely was not ready to stay bright-eyed and bushy-tailed all day ... alas, her school schedule required it.

    As I stand at the door of the bus to get Payton each day after school, I witness her stumbling down the aisle with her eyes half open -- the bus aide holding her up.

    School exhausts her.


    So much so, that I can collect her from the bus, carry her into the house and lay her down -- backpack and all -- with not a flinch. Makes me chuckle, really, because she is so dang precious.

    Now that the weather is getting warmer, I usually can't make it into the house with her without her hearing the screams of the neighborhood children. She perks up out of nowhere and can't get down to play with her friends fast enough.

    She loves her friends.

    Today the neighborhood children and I gathered in the driveway and danced to Alvin and the Chipmunks blaring from my car. They each had chairs and a CapriSun to fill their hands.


    They loved it. They ran around and enjoyed each other's company.






    Until ... the music stopped. And as I tried to figure out why, I realized my car battery was dead. Dead as a dog. 

    But the children continued to play.

    I love days like today. Days where I can forget about all those things in the fast lane and just live life. Dead car battery and all.

    Friday, March 5, 2010

    My heart is smiling.

    Payton's picture is on the homepage of The Arc of the United States website! That means that right now, she the face that people see on a national level for people with intellectual and developmental disabilities.

    My heart is smiling.

    Wednesday, March 3, 2010

    The word hurts.

    Spread the word to end the word.

     The R word. The word retard.

    I admit that I used to use the word ... all.the.time. It was my synonym for the word stupid ... just like many other people in this country of ours.

    I didn't know. I didn't know ... at the time ... how or why it was hurtful. Well ... I suppose I did know that it would be hurtful to those who had mental retardation, because I am pretty sure I would have never used the word in front of them -- even if I was only referring to something as being stupid.

    Now ... I completely understand how hurtful it is. And it is my job ... as the mother of two beautiful girls with some extent of mental retardation ... to tell you why it is hurtful and to ask you to choose a different word.

    Main Entry: re·tard
    1\ri-ˈtärd\ : a holding back or slowing down : retardation
    2\ˈrē-ˌtärd\ often offensive : a retarded person; also : a person held to resemble a retarded person in behavior

    This definition is taken right from the Merriam-Webster dictionary.  The first definition is the use of the word as a verb and the second definition is the use of the word as a noun. Funny how it is listed as being an offensive word right in the dictionary!

    Yet ... many people not in my position think they have a foot to stand on when they say, "I wasn't referring to your child! Get a life -- you should not be offended!" 


    So suppose you are involved in a conversation with someone who says, "My phone is so retarded!"

    Yes ... I get that you are trying to get your point across that your phone is stupid. Likely because of one way or another that it malfunctioned. So in essence, you are using the word retard to describe stupidity in light of a malfunction.

    My two daughters have mental retardation. Are they stupid and not worthy of appropriate functioning because of that?

    Do you catch my drift here? It is offensive to me and many other people in this country of ours ... heck, even across the world! Use of the word retard to mean stupid directly translates into your insinuation that people with mental retardation are stupid.

    Ah ah ah -- shh! Stop. You can't argue with me about this, nor can you tell me I'm overreacting. Because I'm living it and you are not.

    So please ... be respectful, be compassionate. The word hurts. 

    Monday, March 1, 2010

    Our road to an apraxia diagnosis

    Speech has always been Payton's biggest delay. She is a rockstar when it comes to gross motor ... but speech, not so much. It breaks my heart.

    Payton received speech therapy services through the county beginning at around 9 months of age. She continued with that until September 2008 when she was 2 years 7 months, at which point she aged out and began preschool through the county and privately.

    In April 2009, we pulled her out of private preschool and replaced it with private speech therapy. Our concerns about her speech delay were growing ... as did the gap between her expressive and receptive speech. Since that time ... and since starting her on gingko biloba ... her speech has come far. But she is still struggling.

    During her time in speech therapy, I have asked about apraxia ... only to have it swept under the rug. I have always kept it in the back of my mind ... along with the slight possibility that she may have a submucous cleft palate, as evidenced during her T&A awhile ago.

    I guess when they say things happen for a reason ... it is true. I was heartbroken when our old speech therapist left, but in hindsight -- it was a blessing. She was young and had not picked up on the fact that Payton has apraxia.

    And that is a problem.

    After posting a video on my blog of Payton talking, I heard from a few blog readers that are SLPs -- they wanted to know if Payton had been evaluated for apraxia.

    Had she been evaluated for apraxia? Uhhh ... no?

    Here are the comments I received from one of the SLPs that has specializes in treating kids with apraxia ...

    Her errors seem apraxic to me.

    --the unusual sound substitutions like "dyedye" for "byebye" when she can say /b/ sounds for words like "baby" which is harder to say with 2 different vowels than bye-bye

    --the way she simplifies syllables and doesn't always include both/all consonants/syllables in words (e.g. "Duh/Dora" at first then adding syllable after practicing, saying "Duhduh"/Dora -- apraxic characteristic to add /d/ like in front of word whereas most children might say "Doyuh" or "Dowuh" for Dora

    --the oral groping and inconsistency with words like "Zoe", "chips", "shoes", and "blue"

    --the addition of syllables at times like "mapurple/purple", "bobo/boat"

    --inconsistent vowel productions -- although most were pretty close, there are still some that aren't precise

    --overall difficulty imitating words

    Ideas for you ...

    --When working on a one-syllable word, like 'fish', hold out the /f/ sound ffffffffffff then 'ish' rather than saying the consonant sound more than once like fuhfuhfuh ish because she is hearing that as a lot of sounds to sequence together when there are really just 3 in f i sh. Does that make sense?

    --When working on a two-syllable word, if she is getting the first syllable like 'ha' for 'happy', say 'pee' then go back to 'ha+ppy'. This technique has been shown to work with kids with apraxia over and over again. It's like working backwards. They get so stuck on the first syllable or anticipating the 2nd one that they can't produce both correctly. Another example would be a word like 'bunny' if she can say 'buh' work on 'knee' and point to your knee and say 'Say bunny' (she tries it). 'Say nee' (she tries it). 'Say Buh-nee.' (she tries it) 'Bunny.'

    --Take words/sounds/syllables she says well and find other words with those sounds/syllables to practice and focus on saying these for practice. For example, 'bye-bye, baby, bubble, Bible --see the pattern? same consonant with different vowels? Then try words like "mama, mommy, money, maybe' with different vowels/consonants over time...

    --As far as her leaving off sounds at the ends of words, the way i work on this is practicing the word as two syllables (e.g. mil+k) with a ton of emphasis on the k at the end. We sometimes even pat our lap or the table as we say the end sound. Will/can she imitate sounds by themselves, not the letters but the sounds they make if you say 'Say 'kuh''?

    I would love to hear Payton imitate you saying consonant-vowel combinations below to see if she differs with different vowels...






    So then I sent the SLP this video of Payton saying the sounds she suggested ...

    And she said, "I've only watched 1/3 and I'm convinced. APRAXIA APRAXIA APRAXIA."


    To be honest ... I just cried. I felt like I failed Payton. I was angry that her speech therapist hadn't addressed the issue when I asked. And I felt like I failed her some more.

    As soon as I was done crying, I went into fight mode. I googled and googled some more. I found that the best way to tackle apraxia is through use of PROMPT therapy. Our new speech therapist is not trained in PROMPT, however we are having her continue therapy with Payton to approach it from all angles, so to speak.

    I found a local therapy center that specializes in PROMPT. They performed an observation/evaluation of Payton and confirmed that she has apraxia after doing an apraxia specific test. We are currently waiting to get start dates at this therapy center and we also will be having an extensive evaluation done at the clinic founded by Libby Kumin ... I'm really excited for that!

    And ... just to be sure that she does not have a submucous cleft, we have an appointment at a craniofacial clinic. She will be evaulated by several specialists, all in the same appointment ... I'm excited for that too!

    So yeah ... I had my meltdown concerning the apraxia diagnosis ... and I moved into fight mode. I have noticed Payton's speech moving along, so I feel confident we will get there.

    Love her. We can do this.