I Need My Own PT

One of the apparent physical markers in a baby or toddler with Down syndrome is the low muscle tone accompanied by joint elasticity. Low tone in a baby and toddler = extra squishiness!! These factors play directly into physical development everywhere from learning to sit up, crawl, and of course walking. Now how about joint elasticity? Just think crazy flexibility and you've got the right idea! In the last couple of months before Brighton was born, my favorite ultrasound picture of her was from our 20 week scan. One of the first ones they got was of her with her foot in her face, appearing to do the splits or stretching in utero! Of course the dancer in me said, "Yes! She's ready to dance!" Of course I later looked back at that picture with a completely different perspective. That little foot was all up in her face because she has crazy flexible hips due to the joint elasticity.

From 10 weeks on we have had physical therapy pretty much every week unless B was sick, there was a holiday, or the therapist was on vacation. From 10 weeks on we have played and worked to strengthen her muscles in a way that she uses them for optimal functionality, doesn't create any weird habits, or over stretches areas that don't need to be stretched(those hips!). I have always laughed at the irony in the fact that as a dancer and dance teacher I have to spend the first three years of my child's life making sure she doesn't do the splits or doesn't turn out from the hips! Seriously, if I let her she would have a fabulous first position! Never fear, there will come a day when she can try ballet and I will let her teacher see her turnout in all its glory.

So why do I need my own PT(physical therapist)? While I have loved her squishiness, her cuddles, and her amazing ability to melt into my arms it has taken it's toll on my own body. As much as I would like to say I have done a great job keeping up with my own physical fitness the last 2+ years, that is just not the case. Granted I did have a period of time in her first year where I ran about 4 times a week for 6 months and felt great. But planning for a first birthday, company, and then the holidays hit and I slacked off before quitting altogether. Sadly I never jumped back on that horse. Here a year and a half later and I am still suffering from that fact. I am right handed and even though I am constantly trying to hold her with my left arm, invariably I switch back to my right because it is stronger. Miss B has been walking since January(insert clapping emoji here!) and this has helped tremendously. We are constantly making her walk and wanting to build her endurance, but she is also tiny and often times needs to be carried from point A to point B for safety or even for time sake. When she is sick, she not only cuddles, but at times depending on duration or severity, struggles to hold up her own weight. To keep this reality check going we'll add to the fact that if she is sick or teething that means short nights, many of which end up with me falling asleep in the rocker while holding her. Yikes! So as a result my neck muscles are all kinds of messed up. The tension in my right shoulder is crazy. And my lower back aches at times from offsetting my hips to compensate for the little sack of potatoes I am carrying around! Seriously, I can't believe I am going into this!

Why have I spent an entire post on this subject? Honestly I am not even sure. Maybe because it is one aspect of having a child with Down syndrome(DS). Maybe because it is incredibly random and when she was a wee little 6 week old baby and I was trying to process what it would mean to be a mom to a child with DS I never dreamed this could be part of it. Or maybe it's because it is just another day in the life of this Momma and I hope that somehow by sharing the highs and lows, the in's and out's, of having a child with DS it doesn't seem so scary. Or so foreign. Honestly, most days I completely forget the fact that we live with a diagnosis. We are doing life together and that is what we focus on. When I see her I see my fun loving, silly girl, who makes us laugh, and brings so much joy to our home. But for all the soreness, all the aching, and loss of my own range in motion...she is still my Little Miss B, my littlest love, and she is totally worth it. Every bit!

#WhyISign

When I entered public school in the 6th grade there were countless new experiences to adjust too. Anywhere from the sheer number of people or to the fact that there were 6 other Ashley's in my grade alone! I quickly became thankful my parents decided to at least go with a different spelling! (Ashl"EE"" instead of the traditional "EY") Yet one area I found particularly fascinating was being exposed to American Sign Language(ASL) for the first time. There were two girls in my grade who were hard of hearing and had an interpreter. Not going to lie...from 6th grade all the way to graduation, if they were in my class I would much rather watch the interpreter than the teacher! In my shyness it took me a while to jump in and try and learn, but by the time I was in high school I could at least carry on a conversation or even work on classroom projects when needed. Post high school i even used the sign language I knew or self-taught in dance performances. Fast forward many years to having an infant and I started hearing about "baby sign language." I loved the idea that teaching my son a few short words would give us the ability to communicate while he was developing his oral motor skills and forming words. Granted I look back and barely remember a time when my son didn't talk in complete sentences so it wasn't long before "more", "please", and "eat" were surpassed by him speaking. Nevertheless I am thankful for that time.


Let's fast forward a few more years...We now have a sweet little girl who also happens to have an extra chromosome! While the news was very unexpected and had its own time of processing, one of the things we knew we wanted to aim for very early on stemmed from something someone shared with us, "expect and don't accept." From that point on we decided that we were always going to expect the most from her and not just accept the stereotypes from having a diagnosis of Down syndrome. Yes there are factors such as low muscle tone, which in turn causes motor skills delays. Yes there can be cognitive delays and even social delays. Yet we always thought that if we did everything we could to help her reach her greatest potential she could supersede the low exceptions our world typically has for individuals with Down syndrome. At times it has been hard because I have always been of the mind that "babies are only babies once" or "kids are only little for so long". Now that we have wanted to think to the future all the while enjoying the moment, that at times meant working on things "earlier" than I normally would.

With the low muscle tone this typically causes delays in speech development simply because all of the muscles around the mouth and tongue are just not strong enough. One of the terms that has been hardest for me is "non-verbal." For a long time I didn't even look into what that meant or entailed simply because I was scared too know that reality. I heard stories of children not speaking for years. When Brighton was 7 months old I even met a young man who I introduced myself too and then his  mother told me he didn't speak. In that moment my heart broke, that while I am sure he has ways of communicating his wants and needs, the full capacity of his personality and ability to communicate with those around him was limited by his speech. I wondered, "what is he capable of that they will never know about?" He was such a kind young man and I could tell that his mother loved him and he was taken care of, but still my heart hurt. Was there the possibility that I would never be able to lay across my daughters bed and chat with her about her time with friends? School? Things she loves and things that make her sad? While I don't remember for sure if that was the moment something in me clicked or rather it was a slower process, I knew that I wanted and needed to go beyond "more", "please" and "thank you" when it came to teaching Brighton sign language. That we would use this incredible language to broaden our ability to communicate with our daughter. Would it take her longer to learn? Possibly. But the results would be worth it. Hearing her "voice" would be worth it. She is worth it.

Here we are, now at 2 1/2, and my Little Miss can understand and use 85 different signs in ASL!!!!!!!! Now, truth be told there are others we are working on, but she requires more prompting either visually with a picture, visually with me signing them, help signing them(some signs are tricky!), or being asked multiple times. But her vocabulary is growing and I cannot tell you how exciting it is!!! Along with this, she is putting short sentences together, she asks for help, or even comes to me and asks for a specific snack! (chips are her utmost favorite) Last week we were at the eye doctor for a yearly check up and there was a little girl in there who is also 2. Her grandmother apologized because the little girls would shriek every time she wanted something. The teacher in me wanted to share the simple way to show her how to say "more." I am not always the most outgoing person so it wasn't until she asked me a question about Brighton signing, our name being called and walking out the door, that I worked up the nerve to at least say, "We started slowly with "more' "please" and "eat," and it grew from there.

Two days ago we were at a party and the lone child there was almost 2. The entire evening all she did was point and grunt or make a noise indicating what she wanted or needed. Call me crazy, but all I could think of was the fact that when my child was that age she was indicating she wanted more to eat, or something to drink, all without a meltdown.

Furthermore, there was a conversation I had with someone yesterday. I was asked a question about Brighton talking and so I of course delightfully shared that she is signing 85 words!! Imagine my surprise when instead of encouragement or congratulations, the response was, "That's great but does she actually say any words?" Of course she does! Also, many of her signs are accompanied by at least the first syllable! But hold the phone. I just told you my child knows 85 different signs in ASL(a language) but you're more worried about her verbally saying them? What about cognitively understanding those 85 words and being able to communicate them? Doesn't that count? The answer is simply, yes. My limited understanding is that a typically developing child without a diagnosis should know/say about 50+ words between the age of 24-30months. I even read on one website where 25 is considered great. Insert sigh. More and more I am learning that my skin is going to have to get a whole lot tougher on this parenting road. I just wish that in that moment I would have been allowed the opportunity to celebrate Brighton's amazing work so far and not have to defend or explain. Because the way I look at it, saying she knows that many signs is no different than if I had been asked, "Does she know English? Well no, but she does know 85 words in Spanish!" (or French or any language!)

I never imagined that one day I would feel led to advocate for a cause or group people. But then again I never imagined having a daughter with Down syndrome. Taking it a step further, I never imagined that I would find myself wanting to share the joy and value of teaching young children sign language! Recently I read a quote by Rachel Coleman of Signing Time that rang true for me. It said, "I see signing as an essential tool, but only if you're interested in fewer tantrums..." Touche!

For a second post I know this is borderline ranting and for that I apologize. I just hope that if you make it this far in reading you hear my Momma's heart wanting to celebrate not only my sweet girl and her accomplishment just as any mother would, but also the value of ASL. It is not secondary and neither are those who speak it.

Beginning Somewhere

It's hard to believe that I actually wrote this a little over two year ago! At first I was going to change some of it to make it more current. Somehow I think there is value in leaving the original thoughts as they are.

~~~~~

Where do I begin? Well first off I do not consider myself a writer or even very good at articulating my thoughts and feelings on a normal basis much less on a public format where those very muddled thoughts and feelings are out there for all the world to see. Once upon I time I would have considered myself at least adept at putting together a sentence well grammatically, but as with anything that lacks repetition and practice, those too have seemed to fall to the wayside. I will at least attempt to catch my spelling errors or at least hope the spell check gets it and in the mean time pardon my misplaced commas and probably more than a few run on sentences!

I have decided to attempt this seemingly daunting task of starting another blog (first one is found here) because I find myself at a place in life I never expected or anticipated. Daily I am stumbling my way through thoughts and emotions I am not sure how to process and so, after much thought, I have decided to try and write them down in hopes that these words will chronicle my journey and help me learn and grow into a better woman, wife, and momma.

A little about me...my name is Ashlee, I am 31 years old, have been married to a wonderful man for 6 and 1/2 years, and we are the proud parents of two beautiful children - Henry (3) and Brighton (11 weeks). Before staying home with my little ones I was a ballet and modern dance teacher. Outside of my family and God, the arts, dance in particular, is my greatest joy in life. There is nothing else that causes me to feel more alive and more myself than when I am moving. Someday I will walk into a studio again, but for the time being I am thrilled to be a stay at home mom and pour all I can into this brief season of life where they are so young and learn so much.

So what is this unexpected journey? It begins with my beautiful little girl who came into this world with quite the flurry and fanfare just a brief 11 weeks ago. In truth all of life is unexpected and as much as we like to plan out our days, weeks, months, and years, we really and truly have no idea what the next day could hold. I went into that hospital on December 8th anticipating the birth of my daughter. Truthfully I have anticipated that moment my whole life, 25 years were riding on the next few moments ahead of me, hardly believing the day had finally arrived and I would be able to hold my sweet girl, my precious bundle of joy. It was shortly after her arrival that we were told in a most kind and compassionate way that our daughter showed several signs or symptoms of having Down syndrome.

I am currently working on writing her birth story, but considering how brief that story is in reality it is certainly taking me a while to write about it and in the process it could already be enough for three blog posts! In deciding to write these posts I realize there may not ever be anyone who reads this or shares in the process of our journey and that is okay. For me it is meant to be place where I can release my thoughts, emotions, joys, and sorrows. One day maybe even sharing them with my children, with my little miss who has forever changed my life and heart and her story has only just begun.

Ashlee

Photography Credit: Christina Forbes Photography of NC