He Speaks My Language

Gabe got hurt. More specifically he got a splinter. It was a fairly good size splinter too! It was in the outside crease of his hand and it was red and irritated looking. I wouldn’t have known that it was there, because it was cleverly hidden in the lines of his chubby little hand, but he told me about it. He told me about it. My sweet little boy came up to me, held up his little fist to show me and said, “Ow, tiss”.  
I stared at him. My face was blank and my mouth was open. I apparently sat like that for a moment too long because he then repeated the request, shoving the little fist even closer to my face, “OW, tiss” he said again. The insistence in his tone and repeat of his request snapped me out of my amazed stupor. I took him over to the couch, flipped on the light and removed the splinter using my master splinter removing tools (tweezers). I gave it another kiss, he murmured ‘kyoo’, his version of thank you, and ran off to play with his ‘scoobus’.  

I stared after him for a long time; I didn’t realize that I was crying until I felt the tear drop onto my arm. I know what you’re thinking, “no big deal, he had a booboo, mommy kissed it, all better, so what?” but it IS a big deal. It’s a really freaking enormous jumbo large deal. It’s not just a request from an injured toddler. This is an entire new world of realization and understanding we’re talking about. Gabe recognized that he had an injury, he knew that mommy could fix it, how mommy could fix it and then he told me about it. He didn’t just speak, he used language!

  
Speech and language are two different things. Speech is the physical production of sound. It is the articulation, voice and fluency of words. Gabe can speak, he repeats words that are said to him in the best way he can. He uses approximations of words, for example, dog is ‘dah’, thank you is ‘kyoo’, see you is ‘syou’. He also uses signs to speak along with his word approximations; he will say ‘mil’ and sign milk, he will sign grandma and say ‘mama’. He also speaks “Gabeinese”; a combination of babble and word approximations that he puts together and uses to chat with anyone who is breathing within a ten mile radius.  

But language is a method of human communication. Language is a rule based set of processes. Language represents much more than just words, it represents thoughts and ideas. Language is social, it’s communicative, it’s a skill and it is difficult. It’s receptive, understanding others and it’s expressive, sharing thoughts or ideas.

  

Let’s think about it like this; you see a cat. You recognize that the animal you are seeing is a cat. You think of the word cat in your mind and you want to say the word cat. So your brain puts the word cat in a car (motor impulse) and sends it down the highway (neurons) to your mouth (oral motor system). Your lungs have to fill up to produce the air to flow through the vocal cords to produce the sound that will turn into cat. The back of your tongue moves to the roof of your mouth in anticipation of the ‘c’ sound, your lips widen and your tongue drops down away from the roof of your mouth for the ‘aaa’ sound and then the tip of your tongue presses against the roof of your mouth, just behind your front teeth, to produce the “tuh” sound.

Imagine a bicycle instead of a car, a clogged up highway, a mouth with muscles that aren’t as strong, feeling that isn’t as sensitive and TWO words to make! It doesn’t sound like such an easy process now does it? Speech is really freaking hard! Language is even harder! That’s why this is such a big deal. Gabe recognized that his hand hurt and he was able to name that feeling. He was able to problem solve, what will make this feel better? Mommy! He was able to put a name to his feeling and establish a request in two seemingly simple words, “ow, tiss”. He used language to express his pain and his desire for me to help him. And it was beautiful. It was heartwarming, it made me want to jump up and down and it made me cry.  

I have cried a lot in the four years since we received Gabe’s diagnosis, it should be noted that I am kind of an emotional person anyway. In the beginning I had mostly sad and angry tears; those disappeared the moment I held my sweet boy for the first time. I do still have rare moments, where I stare too far down into the future and I begin to shed some worry filled tears, but those are few and far between. Mostly the tears that fall now are ones of joy, happiness and laughter, or when I step on one of the kids’ toys in my bare feet. Now I guess when I do step on a toy, instead of crying, I can just look at Gabe, hold out my foot and say “ow, tiss”.

  

It’s been a while

Actually, it’s been almost a year….361 days since the last blog post. Let me start by saying, I’m sorry….

 
Writing has always been a big part of who I am. Writing is therapeutic for me. Writing is my release, I can put pen to paper (or fingers to keys), and pour out my heart. On my darkest days writing brings me light. My writing often reflects my emotion because I write from my heart. My feelings dipped in ink and stamped on paper. I am transparent, honest and raw. 

But I’m also a hesitant sharer.  I wrote in middle school, scribbling furiously in a secret journal, sharing my thoughts only with myself.  I wrote in high school, sharing some of my most special pieces with just my favorite English Teacher. I wrote when I was I college and newly married, letters to myself, of the future I imagined for myself and my new husband.  I wrote when I became a mom, chronicaling the everyday events of my daughter. Light hearted and happy, these were the stories of my life, a glimpse into the shenanigans of my walk in mommy hood.  

Then I began to write about my son; the guilt that I felt with my first reaction to his diagnosis. I wrote about my feelings about Down syndrome. What it has given and what it has taken away. I need it, my heart needed it. And then after almost a year, I decided to share. I shared everything, I put it all out there. And I was relived. I felt like I was using my testimony to help other families who were just beginning there walk down the blue and yellow road of Down syndrome. I shared my blog with some of my fellow moms, my family and friends. And then something happened. 

Someone noticed my blog, they noticed a post. A post about an experience that I had with a cashier, so they shared it. And they shared it, and shared it, and shared it. Before long the post had been shared so much that it was considered “viral”. Then it turned into something more than my heart on paper, it was a “pro-life movement”, it was a “call for attention”, it was “monopolizing my child” and it “was all a lie”. I looked beyond many of the comments, including the private ones that came with hateful comments directed at my son.  I took comfort in the many encouraging posts from people who commented with love, encouragement and stories of their own. 

 
I continued to write and share here and on my blog Facebook page, but less often. I was hesitant, the comments had gotten into my heart, I was being more guarded with my sharing.  The negative comments became fewer and things felt like they were back to normal, until I found out that Gabes photo had been taken, edited to include the words “I got cancer” and was being used on multiple Facebook pages for likes and shares. I worked hard to get them removed and despite several pages being closed, many more remained active, using Gabe for like farming. 

So I stopped. I stopped blogging, I kept writing, but not sharing. I decided that I would close Hand Me Downs, and go back to sharing with those closest to me only. And then two things happened, last week I got an email with a photo in it.  A sweet baby girl, snuggled up in her mamas arms, her mama wrote, 

“I sorry my English not good, from Italy.  Your writing give me hope when daughter, Elena, was born Down syndrome.   I see your son smile and think it’s all okay.  She is good health and we love her.  Thank you for your sharing. Ilaria”

Then tonight the post Sometimes I Forget resurfaced on Scary Mommy. A good friend tagged me in it and I was initially terrified.  Then I remembered Ilaria and Elana and I just don’t care anymore. In the words of Taylor Swift, “haters gonna hate, hate, hate, hate”.   And “I’m just gonna shake, shake, shake, shake, shake, I shake it off, I shake it off!”  

Feel free to comment below if y’all don’t like it, but I’m all done letting others bad behavior dictate my choices!

After Down Syndrome

  

Everyone has at least one day in their lives that they could call “life changing”. When applied to my life there are a few moments that come to mind; high school graduation, my engagement and subsequent wedding, the night we found out we were expecting our first child, her birth, the day I found out we were expecting again.  I can tell you the month date and year that all of those things occurred, they’re important moments, monumental moments, moments that changed the course of my and then my husband’s life.  One thing that they all have in common is the joy that came with these special moments and the tears shed by me or others that were looking on with love and pride.

But there is another moment, one that will be with me until the end of my days.  It’s a moment that I’m not proud of, a moment full of anger and hate and tears.  Three years ago today, I was blissfully unaware that I was about to add another “life changing” moment to my list.  I had no idea that less than 24 hours from now, I would be given news that would expose my truest of feelings, and leave me shaken, ashamed and confused.

 When I think about it, I don’t really remember much about March 20th, 2012; it wasn’t anymore special to me than any other day.  I couldn’t tell you what I had for breakfast, lunch or dinner.  I couldn’t tell you what I wore, if I was at work or home, if I did anything special with my spouse or daughter.  I’m sure I was happy, or as happy as a pregnant lady chasing a toddler could be.  We had some scary news earlier in the pregnancy, that had seemed to resolve itself, and although I knew the results for our amniocentesis would be in soon, I wasn’t too concerned.

  

And then the next day came.  I remember going to work and having a fairly pleasant day in Triage, I chatted with friends, very few knew that we had an amnio, so it wasn’t on the forefront of my mind.  As I was leaving I checked my voicemail, there was a message from our perinatologist to call him back; our results were in.  So I did just that.  I called him back, and then March 21stwas added to my list of life changing days.  It wasn’t a happy occasion; the tears that were shed were not ones of pride, joy, or love. 

I can sometimes still feel fear and confusion that I felt after hearing the Doctor utter two little words “Down syndrome”.  I can still feel the tears that rushed down, soaking my steering wheel and t-shirt.  I can still picture the confused look on the old man’s face, who tapped on my window to check on me.  I can still hear the three words I shouted in anger at God as I pulled out of the parking lot “I Hate You”.  And I can still hear the thoughts echoing in my head about my unborn son, “I Don’t Want You”. 

As I said, it wasn’t a moment that I remember proudly.  My initial reactions left me feeling guilty and angry at myself.   I went home that night, kissed my sleeping daughter and changed into my pajamas.  My in-laws came over to discuss our results.  I ate cold Ramen noodles.  I had told my mother in law, “I like them cold”, when she urged me to eat them, I didn’t want to tell her that I had no desire to eat anything.  I cried some more and then went to sleep. And then it wasn’t the 21st anymore.

  

Over the following weeks and months I learned as much as I could about life with a child with Down syndrome.   I prayed.  A lot.  I forgave myself.  My love for Gabe grew bigger and bigger, just like my belly, until it felt like my tummy and heart couldn’t expand any further.  Then Gabe came and slipped seamlessly into our lives; Mommy, Daddy, Daughter and Son; our perfect family.   I like to think of the days before Gabe as the days “Before Down Syndrome”.

Those were the days before words like chromosomes, trisomy, Down syndrome, low tone, therapy, advocacy or acceptance were part of my every day vocabulary.  The days before I understood what it meant to use people first language. They were the days before I felt like I understood the meaning of true and unconditional love. The days before I had friends, best friends, that spanned the globe, before I had the confidence to stand up for my children’s needs and before I knew what it meant to take a time line, throw it out the window and be okay with it.  Those were the days before I fell in love with a blue eyed boy, before I knew how wonderful, amazing, challenging and perfect it was to have a child with Down syndrome. 

I wouldn’t give them up for anything, and even though sometimes I miss the simplicity of them, I wouldn’t give up a single day that has came After Down Syndrome either.

   


Inadequate

Merriam-Webster dictionary gives the definition of inadequate as this: “lacking in quality or quantity required; insufficient for its purpose”. I’m certain that if I were in a room full of parents and said “Raise your hand if you’ve ever felt inadequate as a parent”, there wouldn’t be a single person not raising their hand. If there were anyone in the room not raising their hand it could be due only to the fact that someone superglued them to the chair or they’re lying. I remember from the moment that expensive digital test blared the unmistakable word “pregnant” on its little grey screen, I began to question my ability to be a parent. I technically wasn’t even one yet, however there I was unsure of myself and my capabilities. But why? Why are we so unsure of ourselves as parents?

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Is it because there are sooo many choices? Cloth or disposable diapers. Homemade or jarred food. Organic or nonorganic. Breast or bottle. Strollers or slings. Co-sleep or crib. Vaccine or no vaccine. There are even choices for our choices! Pampers, Loves, Huggies…there are entire walls dedicated to varying brands of disposable diapers.

Or is it because we are bombarded by advertisers who portray parents who don’t use their products as a little less than those who do? ‘Choosey moms choose Jiff’; and what about those who like the one with the flying boy on it? Or ‘by the second one, all parents are experts’ and those experts obviously prefer one specific brand of diaper.

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Could it be our innate competitive nature to rear the best children that the world has ever seen; causes us to constantly compare ourselves to other parents, leaving questions and doubts crowding our minds. Am I doing the right thing, should I have fed him that, should I have let her wear that, will they really turn out okay if I don’t let them sleep with me, or if they do sleep with my will they be scarred for life?

Perhaps it’s all three. Or none of the above, maybe something I haven’t listed. The reason doesn’t so much matter as the fact that we do. I’ve heard countless friends and acquaintances express their uncertainty and their concern about the choices that they have made or are making for their children. Questioning their judgment. Doubting their ability based on the going ons around them. I do it myself.

I see parents when I drop off my children who are spectacularly dressed and I’m lucky to show up with pants and a shirt that I didn’t sleep in or wear to work the night before. I find myself tugging my tshirt down over my yoga pants (note I never do yoga) and glancing at my kids; inadequate. I find posts from parents who are rocking incredible homemade therapy sessions and the only thing that could pass for therapy for us that day was him trying to dig out two lost Cheerios under the couch. (I mean that’s fine motor right?); inadequate.
I see moms bent down on one knee speaking soft reasoning words to their tyrant of a toddler and I am immediately reminded of the wall shuddering bellow of “Get.Your.Daggum.Shoes.On.Your.Feet.NOW!” that shot out of my mouth not even a half an hour earlier; inadequate.

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What it boils down to is this; the more I compare myself to those around me, the more inadequate I feel. I gotta stop, we’ve gotta stop. The true judge of our ability is our children. The choices that we make for our families are OUR choices. Make them and stand by them with confidence. Instead of looking around at the other parents doing all the other things that you THINK you should be doing, look at your children. It’s easy to see that what you are doing is enough, it is sufficient, it is adequate, when you use your children as the scale by which to measure.

I know that it’s difficult not to compare, or even judge other parents, but it’s important to remember that that’s what they are; other parents. They’re making the choices for their families. Those choices may not be right for your kids, and you shouldn’t feel inadequate because of that. It’s possible that the parent you’re envying isn’t as put together as you think they are! As parents we all have a similar goal in mind; the health, happiness and well being of our families, we can’t do that if we’re consumed with self doubt.

I’m not going to let the fact that my daughter has eaten dog treats, peed in a potted plant, fed her brother his own boogers or painted him blue with stamps, make me feel like less of a parent. My daughter is incredible; she has a vocabulary that won’t quit, her creativity is inspiring and her sense of humor admirable. My son rocks; he faces whatever comes at him with “a kiss my diapered butt” grin, spreads joy to whomever he meets and challenges this family to be more than just observers of life. Hearing their laughter and seeing their smiles throughout the day confirm to me that I’m doing alright.

My children shall be my scale, not the parents around me! I’m going to move forward as a mama who is confident in her ability, attempt not to allow myself to compare my choices to others and I’m gonna wear my yoga pants proudly. I hope you’ll do the same (yoga pants not a requirement).

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Use Your Words

imageBefore I began my career as a nurse, I worked as a preschool teacher (and I still wanted children!). I said things like “use your walking feet“, “teeth are for smiling and eating apples but not biting our friends” and my personal favorite “use your words“.  I find myself using similar sayings even now when speaking to my children and sometimes even with my patients.   However, I never thought twice about requesting a child to use their words, until I realized that my son might have difficulties forming and using his own words.

The idea that I may not hear the word “mama” uttered from his sweet little mouth until he was quite a bit older made my heart ache a bit. I could remember vividly when my daughter, still small enough to be in her pack-n-play, woke up in the middle of the night to nurse.  She requested in a small but almost desperate tone for “Mama”. My husband looked startled, and asked me if I had heard that.

I had heard it, and was almost in tears, because I had heard much more than those two little syllables. I had heard, “I love you, I need you, I know who you are and you have earned the right to be called my mama”. Okay, so most of that was probably the sleep deprivation that our daughter imposed on us with her insistence on not sleeping. EVER. But there is something so special about  BEING mama for your child for the first time.

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Fast forward a couple of years and I found myself with a different little one in the same pack-n-play in our room. One particular night I sat staring at his little swaddled form and wondering, when will I be “Mama” to him. What I found over the next few months is that “Mama” sounded different when said from Gabe. To him “Mama” was outstretched hands and a giant soggy grin. It was a speed crawl with head tucked under for maximum efficiency directly to my ankles. It was a wobbly walk along the furniture to be wherever I was, just so he could place his chubby hand softly on my knee and look up at me with such adoration in his eyes that it could make my stomach flip flop. Currently, it’s a blonde hair, blue eyed toddler, pulling at my tshirt hem, and saying “Ah-Mee” in his tiny toddler voice.

You see sometimes communication looks or sounds different that what we expect. For most, communication consists of the words that we can hear. The understandable things that are spoken from ones mouth to another’s ear. For some it could be their hands that communicate for them, allowing them to share their desires and appreciation. For others, it could be written word, or touch to speak apps, or taking you by the hand and showing you what they mean. The important thing to know is that communication can take on a variety of forms. It’s imperitive that we take the time to recognize that despite what you might or might not hear uttered from someone’s mouth, what they have to say is just as important to them as what you have to say is to you.

I challenge you to just take a moment the next time that you have the opportunity to meet someone who’s style of communication seems different than yours, to stop and HEAR what they’re trying to say.  It may take a little extra time for them to share it with you, but I’m almost certain that it will be worth it.

Mommy Lesson 700: Nothing to Lose Your Head Over

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I want to first start off by issuing an apology. This apology is to my daughter. Mommy is very, VERY sorry that you were unfortunate enough to bear witness to the events that unfolded this evening. I am certain that the shocking and unsettling incident that occurred will leave you slightly jaded. You may never look at mommy the same, or your Dollie for that matter. I hope that you can forgive me and maybe even forget my unfortunate mistake.

After enjoying a nice family dinner and playing at the play place in our local mall we arrived home just in time for pajamas and bedtime. While picking out her jammies Abi asked if we could change her special Christmas dolly out of her church clothes and into her pajamas too. I said sure and she proceeded to pick out a pair of pajamas for herself and her doll. She then sat down in the floor to change her dolly’s clothes. Peanut expertly removed the shoes and the jacket but struggled with the dress.

She looked to Super Mom for some help and I willingly obliged. I sat cross legged on the floor, the doll standing straight up with her arms up over her head. I nimbly pulled the dress up and over the top, in much the same fashion you would your own child. Things were going great until the dress became stuck around the dolls head. Now, typically when clothing becomes entangled around your child’s head you just tug a little harder. If that doesn’t work, you typically feel for a button or snap that you may have forgotten. If not button or snap is present you just pull really, really hard and eventually the child will be wrenched free of the offending outfit. This doesn’t work for dollies.

Want to know why? Because THEIR HEADS COME OFF! I tugged and pulled and felt the clothes suddenly give and come free of my daughters VERY special Dolly. I was grinning ear to ear until I heard my daughters surprised and terrified gasp. I followed her open mouthed stare to the the neck of the dolly. Smile gone, proud moment over, childhood ruined.

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Abi open and closed her mouth rapidly, rather fish like, gasping for air, unable to say anything. I frantically pulled the decapitated dolly head from the Chinese trap of a dress, and worked desperately to stick it back on. “Ha, oh dear, you know Peanut, um sometimes these things happen. But it’s REALLY easy to fix”. She sat and watched stunned as I attempted to cram dolls head onto dolls body. “She. Doesn’t. Have. A. Head.” I frowned, I mean the darn thing came off so easily, it should back on just as easily, right?

I crammed and twisted for what felt like hours, but I’m sure it was only seconds and finally with a satisfactory click the head snapped back on. I held her up triumphantly and realized that she was looking at me from her backside. “Oh!” I yelped, and quickly spun her head around to the front. I peeked at Abi and found her still sitting there, mouth stuck open. “Hey! Look, there, all better. Mommy fixed her! Yay mommy!” Abi narrowed her eyes at me and snatched her precious Dollie from the dangerous grasp of the beheadding mommy “You. Pulled. Her. Head. Off.”

My attempts at an apology fell upon deaf ears as she set about checking her doll out to insure that I hadn’t detached any other parts. She verified that both arms and legs were still attached before sending me a seething glance and placing her dolly safely in its sleeping bag. She smoothed her hair out and gave her a kiss and placed her gently beside her bed on the floor. Without a word, she looked at me with disappointment, and silently left the room shaking her head. She turned right at the door, sighed and said, “I don’t think that you should play with dolly again”.

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Are You Ready?

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I’m a baby blogger. I don’t mean that I neccessarily blog about babies, I just mean that I’m fairly new to the world of blogs, blogging and everything that comes with it. So I am going to blame my lack of posts on my newness. It has nothing to do with the holiday craziness, working, nursing a flu ridden husband back to health, trying and failing to prevent my children from catching the flu and pink eye, nursing them back to health and organizing, reorganizing and giving up at organizing the christmas gifts that my children were blessed with throughout the entire month of December.

However, I CANNOT let another moment go by without sharing this challenge for change that has been thrown down by an incredible woman. Katie at Changing the Face of Beauty has worked tirelessly since 2012 to change the perceptions of society. It started as a website highlighting children of all abilities through photography. The mission was simple; encouraged mainstream media and companies across the globe to include individuals of all ability in their advertisements and promotions. Katie’s intiiative has certainly changed perceptions and is continuing to gain momentum. And why shouldnt it? Why shouldn’t children and adults with disabilities have an opportunity to promote the brands that they know and love?

Recently Katie issued a challenge; #15in2015. The goal is to convince at LEAST 15 retailers to feature individuals representing a variety of abilities in their advertisements during 2015. Using the #IMREADY individuals across the globe have began calling out their favorite retailers, businesses, brands, and the like, challenging them to step up and join in! To be one of the first (of many I’m sure) to come along side this community and show their support for inclusion.

Changing the Face of Beauty has already made it super simple to join in and challenge whatever retailer you love the most. Take your choice of social media outlet and tag the business (or bussinesses) of your choosing. Add in a few hashtags including #IMREADY, #15in2015, #changingthefaceofbeauty and garnish with a photo! There you go, thats it. It wont take too long, and the resulting change will be monumental.

It can be easy to miss a few little voices, but the public cannot ignore the crowd chant “I AM READY!”. So go on, get to it! And remember “The power of one, if fearless and focused, is formidable, but the power of MANY working together is better” Gloria Macapagal Arroyo.
 

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Gabe has called out #thechildrensplace, #oldnavy, #gymboree, #jellybeans, #thekidscourt, #melissa&doug, #walmart, #mobywrap, #medela, #brightstarts, #target, #carters, #mattel, #toysrus, and #playskool

Do you think they’re ready to represent?

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