They Deserve So Much More

***Let me first just say, everyone is entitled to their own opinion. And everyone should vote & support whom they feel is the best representative of themselves & the values they stand for. I do not believe this is party specific (which is why I personally do not identify as either republican or democrat- I believe if you are more loyal to your party than your country that's a problem... But that's a rant for another day). ***
All this being said I do NOT believe that DeVos is the best representative for our school systems. I say this not only as someone who studied Special Education, worked in the special education & behavioral health fields for going on 8 years now & as someone whose personal passion has been advocating for the rights of people with developmental delays & physical disabilities but also as a mother to a child with Special Needs.
It is evident DeVos has no idea what the American Education system is about but even more disheartening is the fact that with her dodging & refusing to answer questions about IDEA it implies that she does not have the best interests in mind for some of our already most underrepresented & vulnerable students now in her care.
People assume that the our children have the right to a free public education but what many do not know is that, that children with special needs were awarded that  "right" only about a generation ago... & these parents had to fight like hell to get their children these rights. The fight for these equal rights was a long & hard won fight and even then we have a long way to go as a nation to give these children the kind of education they deserve.
Special Education itself is basically in its infancy in this country. Our children deserve so much more & that is why I cannot support DeVos, not when her lack of knowledge & lackadaisical attitude towards concepts like IDEA (which is a Federal Law- I might add) threaten to torpedo what little progress has been made in the Special Education System.
 As an educator/behavioral health specialist, I'm concerned. As a Developmental & Physical Disability Advocate, I'm outraged. But more so, as a Mother I'm terrified. I wanted so much more for my child. I wanted so much more for ALL our children.

*SOTOS MAMA BEAR RANT WARNING*

    It burns me up whenever older people say " I think [insert whatever socially-approved scapegoat is trending here] is responsible for people with like Autism, SOTOS, and/or Down Syndrome, etc. You just didn't see those kind of things when we were in school & now they seem to be everywhere." Well Huckleberry, THATS BECAUSE YOU DIDNT SEE THEM.

    Basic Human rights for people with disabilities is a fairly recent development in our country. Parents who delivered children with any sort of disability were encouraged by doctors AT BIRTH to place these children in government ran institutions, telling parents these were the best places for their kids. Many Many parents took their doctor's advice & gave up their children to these "institutions". I suggest to anyone brave or curious enough to wonder what these institutions were like to read the book "Christmas in Purgatory" It showcases a collection of images of these institutions. I will warn you, anyone with even a remote semblance of humanity will see these images and cry. These pictures were taken in 1966. So yes Huckleberry, You didn't see them, but they were there.

    These institutions ran until roughly the 1980's and sadly their horrors reached far beyond these pictures. Until 1974 , people could & were encouraged to sterilize those with physical, developmental and/or mental disorders often against their will or knowledge [see the 1927 case: Buck vs. Bell]. The state of Virginia didn't repeal that law until 1974, other states didn't follow suit until 1979. Let that sink in my generation. Many of our parents & certainly our grandparents were alive in a time where if you were blind, deaf, autistic, depressed, homosexual, epileptic or otherwise physically disabled you could be sterilized against your will by the government. And many were. So yes Huckleberry, You didn't see them. But they were there.

    So sure this explains why you didn't see them in the community but what about schools? Surely not every mother gave up their child. We think of a right to an education for our children to be a basic American right from birth. But children with special needs weren't awarded that "Right" until 1975 with the "Education for all Handicapped Children Act". And I can tell you that act went about as well as the desegregation of schools in the south went in the 60's. This means that those children who weren't given up from birth weren't even given the right to get an education. It was up to the principals to decide if they wanted to take in that "burden". Many did not. Many fought against allowing children like those by citing social & financial reasons. It was quite a fight for many parents to get their children the same right to a "free public education" as their typically developed peers. Some may say the fight is over seeing as the "Education for all Handicapped Children Act" was reformed and renamed the "Individuals with Disabilities Education Act [IDEA]" in 1990, but I challenge those people to attend an IEP meeting and tell me the fight is over for our children.

    So yes Huckleberry, you didn't see them in your community or your schools but they were there. THEY WERE ALWAYS THERE. This isn't  some new phenomenon caused by vaccines or foods or [insert whatever asinine explanation you want here]. THEY. WERE. ALWAYS.HERE. They're just no longer hiding. You just see them now. #theywerealwaysthere #seemenow #basicrights #disabiltyawareness #autismawareness #knowyourhistory

Just Breathe and Keep Walking

Growing up I spent my summers in the woods, making paths with my father on our property. It was fun, exploring and creating trails that would always lead safely home. I had a lot of defining moments on those wooden trails and I've always envisioned life as one big path where big moments and decisions determined the direction you'd go. But if you had a destination in place you'd eventually get there.  Pre-motherhood I had my path mapped out. And oh buddy, did I know my destination. I knew where I was going, what I was doing, the kind of wife, mother and career woman I was going to be.

Then I had my daughter. Then we got her diagnosis and that pre-motherhood path I had mapped out so well bit the dust. Here in front of me was a whole new journey and I had no idea where the destination would be.

I've been on this journey for about 2 years now and sometimes I think back on what I would say if I could talk to myself the day we found out about Sotos Syndrome. And outside of the "suck it up buttercup and do what needs to be done for your family" mentality I tend to go to in times of crisis, these past two years have given me a little more insight into how things are. So in the spirit of If-I-only-knew-then-what-I-know-now,  I've compiled some advice I would've given myself or others who are currently at that moment.

You're going to be scared. That's a good thing.
Being scared is what's going to bring the fight out in you and you're going to need that. Being scared is what's going to turn you into a Special Needs Soldier and Lord help whatever army gets in your way. You're going to be scared in waiting rooms. You're going to be down right terrified waiting for that "test results" phone call. You're going to be scared and because of that you'll do your research. You're going to study that diagnosis, your child, treatment options, therapies. You'll do more background checks on doctors than the FBI does on criminals. You're going to learn how to be firm when you're on the phone with a doctor's office and demand to see a specialist. You wont back down on what your child needs because you're afraid of what can happen if you're not fighting for their best chance.You'll learn quickly that fear isn't a weakness it's a Special Needs Soldier's best weapon.

You're going to be angry. Don't let it destroy you.
 Now there's fear and there's anger. Fear is productive. Anger is destructive. In our situation, anger is a wasted emotion. In the beginning you're going to be pissed off that your life isn't going to be what you imagined it to be. You'll be downright fuming when someone asks "What's wrong with your child". But let me fill you in on a little secret- being angry isn't going to change anything. Being angry isn't going to magically give you the life you thought you were going to have and contrary to how much you might enjoy it, slapping insensitive people in the face isn't going to force them to learn a little decency. Learn to let go and not let anger take up much of your time, you're going to have so little time as it is to fill might as well fill it with something fun.

You're going to be amazed. At your child and yourself.
Now with all that research your fear has driven you to do you're going to come across a long list of things your child might never do. Here is where the beauty happens. She's going to walk. She's going to say your name. She's going to sing. She's going to laugh. She may not always do things as quickly or as well as her peers but she gets there and when she does it is down right amazing. Let the rest of the world have "typical", this is so much more. As for yourself, you're going to learn that you have a strength within yourself you never knew you had. You're going to love your little girl so much you'll feel like your heart is going to explode and you'll never know pride like when you watch her beat the odds time and time again.

You're life is going to be different. And that's ok. It's a blessing.
 You'll arrange your work and social schedules around therapies and doctor appointments. You'll look up diet plans based on how different nutrients affect brain growth vs. how many pounds can we lose. You're not going to give two cents about what others think of you and you'll find that not measuring yourself to anyone else's standards is incredibly freeing. Soon you'll find that  the life that you so desperately wanted pre-motherhood is nothing compared to what you have now. You will never underappreciate the value of family, good friends, health and happiness. You'll have your priorities straight because they have to be. Then one day you'll wake up and realize you weren't given the raw end of the deal after all. So few people you know will get to appreciate life and the little things like your family does. You'll be reminded with every new word spoken and milestone reached how incredibly blessed you are.

But above all else, you should know your life is going to be filled with a lot of unknowns. You're going to be faced with a lot of things you can't control but you're going to be ok. Your family is going to be ok. Just breathe and keep walking this path, even if the destination's unknown. Because; you see, sometimes the best destinations can't be found on a map and the best paths are the ones we pave ourselves.

Things I Don't See

     Yearly evaluation time came around again for our little family. It’s a time of nervousness- and I’d be lying if I said that I wasn’t hoping for there to show some across the board improvement in Natalie’s development. And although her social skills were above average and cognitive skills on par, fine-motor & gross motor were delayed and speech was on the line. So our little family is gaining a developmental therapist and we hope that she is as much a blessing to Natalie as her Physical Therapist is now. 

     For those of you who don’t know how an early intervention evaluation meeting goes, it’s something along the lines of a game of 20 questions on steroids. Your mind is racing trying to think back about everything that your child does or doesn’t do. On the questions you can answer yes to and give examples for it’s the coolest feeling. You’re showing videos and telling stories of cute things they did in regards to that particular milestone. You’re all excited to share because you’re there every day. You see the little improvements and the efforts that go into kicking a ball or figuring out a shape sorter. Those milestones were earned in sweat and meltdowns and countless hours of encouragement. And you bet your boots you’re gonna tell anyone who asks all about it.

     But then comes the “what are some of the things you don’t see with your child” questions. There’s the questions you can’t say yes to, and a little bit of your heart sinks. I think it’s because in that moment you blatantly see what you’ve almost forgot- that things are going to be different for them- harder. Not impossible but not as easy or as quick for our children like it is for most others. 

     As Natalie ages those “Things I don’t see” questions get harder and harder to answer. Because I don’t see things the way I did a year ago when her diagnosis was fresh and scary and every little action or inaction was scrutinized and studied. I don’t see the classic Sotos features in the shape of her head and eyes. I see eyes as blue as my mothers and hair the exact shade as her father’s. I see my smile on her little face. I see Natalie and she is “normal” to me.

     It took me a while to see that the “things I don’t see” are not the things that truly matter. Don’t get me wrong, developmental skills are very important. I definitely am the type of Mom to do everything in my power to make sure she has every resource made available to foster her development. But I’m not going to let the things I don’t see overshadow the things I do. Determined. Fiesty. Kind. Happy. Funny. Beautiful. Cherished. Loved. Wanted. Strong. - those are the things I see when I look at my daughter. That won’t ever change. 

A Life Is Made In Little Moments

     Maybe it’s the fact that my daughter just turned two but lately I’ve been thinking a lot about how blessed our little family is. And how blessed in general our life is. A lot of my posts talk about the struggles and fears that go along with the Sotos Syndrome diagnosis, but not today. Today is about Happy. Today is about celebrating all the ways our lives have been made beautiful by a child who just happens to have Sotos Syndrome. Today I’m going to share moments.

 I think sometimes we get caught up in the big moments that we forget to cherish the little ones. We forget to look down from our careers, our ambitions, our fears, our own internal dramas and we miss those little seconds of perfection. I’ve caught myself doing that a lot lately, but not anymore. Those little moments are priceless and they don’t last forever. My career can wait… this life with our child is too important to miss.    

If I could’ve sent a message to myself a year and a half ago when I first heard the words Sotos Syndrome, it would’ve been this post. I would’ve told myself that for all the scary moments there are hundreds of happy little moments just like these. For all the uncertainties there is hope. For all the struggles there are triumphs. I would have told myself that a life is made in little moments and our little moments are beautiful.