Life Is A Game of Whack-A-Mole

I typically end my parent presentations with a piece called The Five Year Trophy, a tale from years ago which talks about the obstacles my girl has finally slayed after years battling against the “fight or flight” responses of her SPD. For awhile it was a final piece, as I fully believed, falsely once again, that our days facing SPD were behind us. I would stand up at a podium, staring into the eyes of other sensory parents, leading them to believe I had led this charge towards SPD and slayed it like the ending of some heroic adventure movie.

Then, about a year ago, my daughter started to regress. She would come down from bed at night complaining that her belly hurt because she “couldn’t shut her mind off.” She began to complain about the noise in her classroom during indoor recess. Clothes began to feel tight and uncomfortable. She had a meltdown at Disneyworld even though, one year prior, she conquered Disney like a champ. It began to unravel quickly, impacting her in every aspect of her life until she got up the strength to approach me and say, “I need help. Take me to see someone.” So,  I did.

I have sat here for a year thinking about what has happened. Thinking about that Five Year Trophy piece. Thinking about what I thought it symbolized because I realize that what I thought was all wrong. That piece wasn’t the end to our story but merely an ending to a chapter in our lives…our lives as a family living with someone with SPD. It concluded a time in our lives where we were severely limited in what we could do and in who understood us. It marked major milestones for my girl. And I couldn’t be prouder about all of it. What I am not proud of is foolishly thinking, and possibly leading any of you to believe, that our story was over. That SPD is something that comes to an end, like the final scenes of those movies where the hero slays the evil monster. Because life isn’t like some heroic movie. It’s more like a game of Whack-A-Mole. When we are first faced with an obstacle we get overwhelmed that it keeps popping up around us before we get a chance to make sense of what is going on. Before you know it, that game is over. So, do we give up? No. We put another coin in and we try again, maybe even hitting a mole or two. This gives us confidence and with each game that ends we get quicker to start a new one. What we realize is that, even though months or years can go by in between games, the game itself is never truly over. Each time you play, things pop up and as good as you get hitting them down, another quickly pops up behind it. You never hit every one and keep them down forever. But, with each game, you increase your score. And your confidence. And no matter how much time passes, you play over and over again hoping you will be better than the last time.

In the year that has passed since my girl began to show distress, things have been on an upswing. She began therapy and aerial yoga with an occupational therapist. She reads herself to sleep to help her mind relax at night. She has made some major accomplishments..most recently being elected to Student Council, giving a speech in front of a crowd of people in a noisy auditorium. She earned spots on a competitive dance team and performed at the World Dance Championship. This holiday season, she will perform with an elite ballet company in The Nutcracker Ballet. But, with all these things, I won’t write some heroic piece marking the “end” of SPD in our lives because, with all these accomplishments, comes other aversive reactions to her environment that typically I would ignore…changes in the clothes she can tolerate, screaming while brushing her hair, hating the feel of a bathing suit or the way the water feels on her face when she has to take a shower. So, I will keep playing this game and, instead of hoping for an end, just hope for the best possible outcome instead…for I know the best is yet to come. And although we may not ever get to the slaying of the dragon, my girl is and will always be my hero. She has shown me, in her almost ten years of life, that it’s not whether you win or lose, but how you play the game. Although having a kid like her sure feels like winning to me.

Back To The Drawing Board

Wow..it has been a long time. I have had dozens of narratives about our life swirling around in my brain for months, keeping me up at night but, when I sit to write…nothing. Complete and total writer’s block. Needless to say, sitting here now, feels really good.

For those of you who don’t know..my lack of writing has not taken me away from serving the needs of the parents in the sensory community. I have spent the last 18 months giving lectures to parent groups about raising a child with SPD. I have also had the honor of speaking to teachers about recognizing sensory needs in the classroom and teaching a sensory rich art class to children with special needs. It has been amazing what this little blog of mine has allowed me to do.

With all that being said, I would be lying if I said that things were great at home. Truth is, we are in the midst of a downward sensory spiral. One that I cannot help but feel I have let happen. I should have been more on the ball. I should have been doing less preaching and more parenting..I should have been paying attention. But the signs were so subtle and I was so distracted, that I missed the symptoms that were telling me that my girl was having a major setback.

When I talk to parents, I fully disclose that I am not an expert of SPD, but that I am an expert in my daughter. Seems these days, though that this is not exactly true. I am an expert in my daughter of the past..the one that I can look back on in hindsight. I can tell the tales of our struggles until we reached success. But, then something happened…this daughter of the past began to grow up. Her sensory signals have changed and I am once again the struggling parent, completely in the dark as to how to help her. So, let me go back to where it all began for us once again:

On Christmas Eve my daughter threw up in the middle of the night, as many kids do who eat too much when their parents aren’t watching. In the weeks and months to follow, she started to have trouble falling asleep. During her very first sleepover with a friend for her birthday, she spent the night curled up crying on my lap because she was afraid she may had eaten too many sweets at her birthday party earlier that day. This was five weeks after Christmas Eve and, although it had yet to happen again, she couldn’t shake that horrifying sensation. This isolated incident had turned into pure, uncontrollable anxiety. So much so that she got herself out of bed one night to tell me that it was time for her to go back and talk to someone about her feelings. From this point on, in the months to follow, the anxiety creeped up into other aspects of her life. She began worrying about things before she had reason to. We took a trip to Magic Kingdom before our first Disney Cruise where she cried most of the day, even though she had been there years earlier, and triumphed over every single overstimulating experience. It was the “what ifs”…the rides she hadn’t watched a video about, the new fireworks show that may be too loud. Suddenly I saw her covering her ears in anticipation of loud noises, something she hasn’t done in years. Prior to the cruise, I spent weeks preparing for her possible motion sickness, spending hundreds on every preventative measure I could get my hands on. Yet, she tolerated the motion just fine but had a near meltdown in the Bahamas when her bathing suit got wet and felt too sticky. I haven’t packed a spare bathing suit for the beach in over 6 years.

So, the new SPD, the 9 year old version, has us back to the place we were many years ago. It has her body engaged in full defense mode, making textures and temperatures and noises too much for her to handle. It has her shoving small objects in her mouth when she is desperate to soothe herself. It has me missing all the signs, leading her to have to tell me she needs therapy to make her “nervous feelings” go away and then reacting the wrong way because I feel like a failure. It has us, as a family, once again at a point of “where do we go from here.” And while I am often the leader for others to find their own way on their journey, I am like a captain who has abandoned her ship for my own.

So, I sit here, as I used to years ago, typing out my feelings to help ease my anxiety so, in turn, I can help my daughter with her own. It has me going back to where it all begin, this community I built almost five years ago to the day, to draw strength and support from  my village as I figure out what to do next. This village isn’t just helping raise my daughter, but it is also helping raise a mother…the kind of mother my daughter deserves. So, I thank you, whether you have read every piece or whether this is your first insight into our life, because without you I wouldn’t be able to feel that, although lost, there is a bright light up ahead ready to show me the way once again.

 

The Non-Sensory Sibling

I often wonder what my girl will think when she gets old enough to read my posts and hear how we came to be the family behind My Sensational Girl. Will she view it as something positive or will she feel like I violated her privacy by sharing her life story without her permission?? Only time will tell.

I have been quiet lately…there hasn’t been too much to tell. Life is good…quiet…normal. SPD still lives with us, but we are the ones in control. We are at the place in our journey I had always hoped to get to. My girl is thriving. She takes risks and succeeds. She overcomes. She copes. She is HAPPY.

This week I overheard a conversation that made me sad. My little one was talking to her big sister. She noticed that there aren’t a lot of pictures of her in the house.  I looked around and my heart sank..she is right. There are wall collages and frames all over of our first born. Only one or two pictures of my little one are displayed. There’s that half-finished baby book in my closet under her sister’s whose book is filled to the very last page. And then there is this blog..35 plus entries documenting the life of our first born. Every piece describing how wonderful, resilient and inspiring my oldest child is…not only to me but to the world. And suddenly I became more concerned, not with how my oldest would feel about my blog but rather my youngest.

I feel like a terrible mother. I know full well that, in most families, the oldest child tends to get an overabundance of effort and energy. I was the third child…I get it. If I went to my parents’ house I am certain there would be less documentation of my childhood than that of my older siblings. It’s not for lack of love, it’s for lack of energy and time. The first born gets undivided attention. There is more of you to give that first time around. That’s not the part I am beating myself up over. What upsets me is that I never realized that my second child is just as important to our story than the rest of us and for the last three years I have overlooked that. That’s right…she is only three. But she has done more for our sensational girl than I have. Shame on me for not putting that on display.

My little one is a force to be reckoned with. She is equal parts sweet and sass. She is funny…not in that cute, toddler way but genuinely hilarious. She lights up a room and has the face of an angel even when she is at her most devilish. She is outgoing. She is brilliant. She is that final piece to our family puzzle. From the time she was old enough to be aware of others, she has demonstrated empathy and compassion towards her sister. Before she could talk, she could fully understand that her sister sometimes needs a little extra TLC. I can recall times as an infant where she would crawl over to comfort her crying big sister. They are the best of friends. They love hard and they fight hard. They would be lost without one another. And I wouldn’t be who I am if it wasn’t for the BOTH of them.

Before my second child came along, there was still a part of me who thought that maybe I made more of my oldest child’s issues than necessary. But then the little one came along. Sure, she doesn’t like loud noise and hates it when her hands get dirty. Just the other day she fell apart entering an indoor water park on our family vacation. She was scared of the noise and all the sprinkling water. But then, it was over. She regrouped within minutes. She could be talked down off the ledge. And, just like that, she was fine. My oldest couldn’t get her bathing suit wet for years. She didn’t learn to swim until she was seven. She still doesn’t love taking a shower. Had she been three when we went to this water park, we would have had to leave. In the past I believed in the possibility that maybe we were just neurotic, first time parents. Now I know for sure that my gut instinct was right. Now I know that every fight for her rights to services was warranted. Now I know that my oldest child was born with a manageable disability that could have overcome her completely if not for early intervention. She did not “grow out of” her SPD. She trained her brain to deal with it. My oldest child didn’t bring me to this realization, my youngest did. So yes, my youngest child may be neurotypical but that doesn’t mean she is any less sensational or important as her big sister.

So, to my sweet, sassy, spunky and super special youngest child…I am sorry you got the more distracted version of me. I am sorry I haven’t given you the credit you deserved. You are a star. You are a leader. You are independent, strong and confident. You will go on to do great things. You are the person I wish I could be. Thank you for being what we all need you to be for this family. Thank you for being you. I love you more than you will ever know.

Though she be but little, she is fierce!’

-William Shakespeare

To my daughter’s first general education teacher…


 

Dear Teacher:

I don’t know you but I’m fairly certain you know me. The mom who almost sued your district to get her daughter OT..that was me. The one who has gone to administration to make sure an IEP was in compliance..me again. And let’s not forget that time I hand delivered a letter to your superintendent’s secretary when other administrators tried to remove my daughter from the school she has attended for the last two years. All of these stories are true and in one week you are about to become my daughter’s teacher for the next school year. I know what you must be thinking..why me!?

Unfortunately, you and I will never get the time to sit down and discuss my side of these stories but I’m hoping you will learn that I am not as bad as those stories make me out to be. Yes, I have a long and mostly unpleasant history with your district. I can’t change that and quite frankly I wouldn’t want to. I may have gotten a bad wrap but in doing so I have gotten my daughter the support and assistance she needs to get where she is today..and that is as a declassified student in your general education class.

When you meet my daughter for the first time you will truly believe I’m delusional. Don’t feel bad..most people do. Her issues are easy to miss. So, here is what I want you to know about her…she is sweet, passionate, funny and brilliant. She is popular and well liked by all. But regardless of how she presents, she is still a child with Sensory Processing Disorder. So, what does that mean? To start, she is very impulsive. She talks…A LOT! She will call out, talk out of turn, and act without thinking. She doesn’t mean to disrupt you nor is she consciously seeking attention. She is just overly excited and easily overstimulated. She may not seem bothered by the environment around her but deep down inside all the noise and activity of the normal classroom environment is too much for her to take in. She will want to chew gum all day and keep a water bottle at her desk because the sucking and chewing calms her down. She also needs to move and if that need becomes greater than she can tolerate before the schedule allows her to do so, she will move on her own without permission. She has learned ways to move around the classroom so that it won’t disrupt you or the other students. If you can, give her jobs to do, she loves that. Organizing books, delivering messages to other classrooms, giving out the lunch boxes, taking the chairs off the desks…any of these simple tasks can give her what she needs. Doing so throughout the day will make for an easier day for both of you. The most important thing I can tell you about are the times you will see behaviors you will feel the need to correct..rigidity, difficulty with turn taking or difficulty with situations where things don’t seem fair to her. These are important because they aren’t just behaviors that need correcting, they are signs that she is internally unregulated and starting to unravel. In these instances behavioral intervention will not be effective. She knows the “right” and “wrong” ways to act in these situations but, when overstimulation starts to overpower her, she will seek external control. This is a sign that she needs a break..a class job, a quick walk or some quiet time with a book will be just enough to reorganize her nervous system and calm her down before she starts to cry.

Now, I know this may be a lot to take in. I only know all this about her after studying and analyzing her for years. I understand you won’t have the time to really digest this before having to dive right in. I also understand that you have 20+ other students to worry about. So, I am asking you to just trust me. Trust me when it comes to this one student in your class. Let the work I have done with her over the past few years guide you to making this a successful year regardless if you can see her difficulties or not. In seven years, she has learned to manage this extra set of needs she was born with. She doesn’t need much from you…just patience, compassion and understanding. If she knows that you “get” her, she will have the confidence she needs to give you her very best.

This year is not only a new experience for my daughter but for me as well. She has always been a special education student and I have always been the special education parent who is also a special education teacher. She is used to having several adults in the room leading and guiding her throughout the day. This year she will have only you. That’s a big job but it’s one I am confident you can handle. You see, I am not only my child’s biggest advocate but a teacher’s biggest advocate as well. I know how hard you work and how thankless it can feel. I know about those small moments you find in a day that you turn into valuable life lessons. I know that the decisions you make on behalf of your students come more from your heart than your head. I know that parents will criticize you more than recognize all the good that you have done. So, if you are truly thinking “why me?” the answer is simple. You are the right person for the job. You are my child’s greatest chance for success in this transitional school year. You are the perfect and delicate balance of structure, routine, patience and compassion. You are the teacher who can push this extremely intelligent child to reach her full potential while understanding that she is wired just a little bit differently underneath that confident and cheery exterior. And regardless of the ugly history with me and your district, you and I are starting fresh on this journey together and this letter is the start of what I hope becomes open and honest communication between parent and teacher. So let’s take the opportunity to work together and make this school year the best it can be.

I believe in my daughter. And I believe in you too.

“A teacher affects eternity, they can never tell where their influence stops.”

-Henry Brooks Adams

 

 

 

The Sensational Dad

Given the fact that my name is attached to our stories, I tend to get a lot of credit and praise for my daughter’s successes. It is flattering and I try my best to acknowledge every kind word or comment that comes my way. But it is time I give credit where credit is way overdue because there is one person responsible for where we are today. That person is my husband.

As I write this secretly as he sits on the opposite end of the couch I know he will kill me if he found out he is the topic of my latest piece! Anyone who knows my husband knows he hates attention. In fact, to celebrate his 40th birthday, I had to arrange to do it months earlier, on the weekend of my birthday, using an email address created for the sole purpose of planning an event where he would be celebrated. All this so he wouldn’t suspect a thing. He is simple and wants for nothing. It is one of his best qualities.

When I first approached my husband because I suspected that our child was struggling he did not question a single thing.  I would be the one constantly questioning myself and all he would say is, “I trust your judgement.” From that point on he has attended every meeting, appointment and evaluation he can. When we started our daughter in counseling, there was a mandated parent counseling group. I didn’t even have to ask him to participate. He was at every session and tried his best to implement every strategy we learned. He is just as much the sensory parent as I am. Over the years I have watched him study our daughter so he could understand what she needs. He will bundle our girl up in the dead of winter to put her on the swingset or get down on all fours while trying to watch a Yankee game so she can press herself firmly on his back. He knows what she needs, not because I tell him, but because by being involved he has learned what she needs just as well as I have.

My husband’s support doesn’t end with our daughter. Some of the most important parts of our story reaulted because of the support he has given me. The strides we made with our school district wouldn’t have happened if I was left to fight the fight on my own. I am a quitter. The minute I feel things get difficult, my instinct is to run for the hills. But, when the going got tough with our district, he didn’t let me quit and I wanted to quit every single time. I gave up, I didn’t think I could do it and that was partly true. I couldn’t do it but WE could. When administrators ignored my calls, my husband would call and they would respond instantly. He would ask me what I wanted him to say and the second my words came out of his mouth, we got results. He came to every meeting because he wanted the district to see we were a united front. But, most important to me, when I broke down crying and ready to run, he simply didn’t let me. When I ran out of steam, he pushed me to keep going. He believed I could and, each time, we succeeded together.

It took a long time for me to accept that life is hard, especially marriage and parenting. It all takes an extreme amount of work but a wise man who shall remain nameless because he hates attention once told me that while all these things are hard it’s how you get through them that counts. We packed a lot of things into the ten years we know one another and we have come out better each time. All because he never  let me give up.
So while I may look like The Great and Powerful Oz, just like the movie, it’s all smoke and mirrors. My husband is the man behind the curtain. And a great one at that. 

There’s that saying that behind every great man stands a great woman but in this house those words aren’t true. Instead, behind this sensational girl and her amazing little sister stands a good-enough-and-trying-to-be-better mom  with an even better husband and dad right next to her. We aren’t perfect..far from it. We fight, we nag, we get on each other’s nerves ALOT…but we love this life we created and we are a team. Without that, we would have never made it and neither would our daughter.

So if you are ever in my husband’s company, please don’t sing his praises or mention this piece I have shared with the world. And if you ever happen to be with him in a restaurant for his birthday, don’t dare tell the waiters to come over and sing!! I suspect I am in enough trouble already 🙂 

Swimming Without A Float

Summer is in full swing in our house. School is over and we all survived my first year back to work full time. Our family has had a great year and this summer feels like the perfect opportunity to kick back, relax, and enjoy the rewards of all of our hard work.

This summer, we joined an athletic club where we have been spending most of our time. It has a great child center with lots of activities and an amazing pool. Many people we know have joined so everyday there is a chance to meet up and hang out with friends. The girls love it and so do I! It’s been great so far!

Summer had always been my favorite season until I had a sensory child. When my girl was a toddler she just couldn’t tolerate the heat, sand, sweat and sun. She hated getting wet and the minute a drop of water hit her bathing suit she would ask to change. Vacations were a disaster. Summer became stressful because there was little we could do that didn’t send her into a tailspin.

Little by little my girl has grown to love summer. It takes her a few weeks to get used to the heat but, by the time school is out, she is raring to go. She loves the beach and has gotten used to the feeling of a wet bathing suit clinging to her skin. So, in the last few years, with some accommodations, we have been able to enjoy summer as a family. However, there is still one thing that my girl hasn’t learned to do. She is now seven years old and she still does not know how to swim. Typically I am not bothered by the need to explore things on her time table but swimming is different. Swimming is a life skill…a survival skill. Having a child (and now two children) who cannot swim puts my stomach in knots. But we have tried swim lessons in the past and it just didn’t work. In the early years, the water itself was too uncomfortable for her. Last year we tried at the town pool but the water was too cold.  Minutes into the first lesson, I see my girl crying in the pool, lips blue and shivering. So, we stopped.

When we joined our club last month, I signed both my girls up for swim lessons. I knew by the end of last summer that my girl had grown comfortable enough being in water and that it was the right time to try again. Our first few days at the pool, she insisted on wearing a float even though she never enters water deeper than she could stand. After a few days, I finally weaned her off the float. She was uncomfortable at first, but got over it quickly. Then, days before her first lesson, something amazing happened. We go to the pool at our club and I notice my girl swimming. Not doggie-paddling above water but full-fledged, underwater swimming. She is wearing goggles and holding her nose and just diving in. She is swimming under a sprinkler, she is jumping in off the side of the pool. She is SWIMMING!!! An hour or so later, we head to the indoor pool. My girls always like to end the day there before we hit the showers and head home. I had just gotten to a chair to put our stuff down when I hear, “Hey, mom, watch this!” And there she goes…swimming again but, this time, she isn’t holding her nose. I asked her where she learned how to do that and she said, “Nowhere, mom, I just taught myself!”

Since that day last week, my girl has been swimming without a float…something that doesn’t just represent what she can do in a pool but rather something that she has learned to do all her life. I have always thought that she was given to me because I was supposed to teach her how to navigate through life. Instead, she has been the one who has been teaching me. There are so many things in life I never pursued because I was afraid to “swim without a float.” But not my girl. She has been taking risks her entire life. Even when she falls flat, she gets up and dives back in before I can even reach out a hand to help her. She is resilient and courageous. She will try anything once before deciding if she can keep going where I don’t even dare try for fear of failure. And when she falls short, she just tries again when she is ready. She doesn’t care about what other people around her are doing, she moves at her own pace. She doesn’t feel pressured to keep up with others. One day at the club she asked to take the rock wall class. She is afraid of heights. After the class I asked her how it went and she said she only went as far as she felt comfortable. This is just another example of just how comfortable she is with herself. She knows her limits and she tests them but also knows when she has gone as far as she can tolerate.  Others may have gone further but she doesn’t care. She is comfortable enough with who she is to do what is right for her.

In her seven years, my girl has learned to fight the impulses that overwhelm her. And, just as she has learned to do this, so must I resist the impulse to handle her with kid gloves. She doesn’t need me to do that. She has proven she can handle more in life than I can. But, I am her mother and it is my natural instinct to never want my kid to fall. But just as she does things on her own timeline, so will I. The more I experience life with her, the more I learn and the more I am inspired.

Come to think of it, I just realized I never learned to swim….maybe it’s about time I give it  try!

“As soon as I saw you, I knew an adventure was going to happen.”

-Winnie the Pooh

The Five Year Trophy

Yesterday, my sensational girl participated in her fifth dance recital. She was just a little over two years old when she showed an interest in dance. It was also a time when the letters SPD were not yet a part of our vocabulary but the behaviors and the meltdowns were at their peak. After two failed attempts at dance class, I gave up. Whatever was plaguing this little girl clearly overruled her ability to conduct herself in a dance class the way the teachers expected. And although her dance experience was far from successful, she kept asking to go back. So a friend of mine suggested I try a third studio. She heard amazing things about the teacher. Fast forward five years and this amazing teacher has turned my overstimulated little toddler into a confident, successful and happy dancer. So here we are now, replaying all the great moments from  yesterday’s show, which included my youngest child’s first ever turn on the stage where she, like her sister before her, danced her tiny, little heart out. We are celebrating this milestone with my daughter for five years of hard work which will soon be rewarded with the eagerly anticipated Five Year Dance Trophy.

This trophy was something my now 7 year old girl has talked about all year long. She is counting the days until that shiny token of achievement will be placed in her happy, little hands. However, no one is more excited for her to receive this trophy than me. You see, this trophy does not only mark a major accomplishment in her life as a dancer but it marks many major accomplishments in her life with SPD..three letters which now are as familiar to us as our own names. So, as I sit here and write, I can’t help but reminisce about the other milestones this trophy represents because this year has been, by far, my girl’s most successful year to date since we started this journey five years ago.

This year, my girl took her first plane trip where she talked herself through the first few frightening minutes of liftoff before I even had the chance to comfort her.

This year, she has taken her first trip to Disney World, experiencing the magic with wide-eyed excitement as any other child would.

This year, she attended the Halloween dance at school, looking forward to dancing the night away with friends. Last year, she cried until we got there and clung to me until the end when she had finally gotten acclimated to the noise and chaos.

This year, she has been declassified from special education, not because she no longer has any issues but because those issues no longer interfere in her life as a student in a significant way. 

This year she has gone on her first amusement park ride, skated at her first roller rink, attended her first local fair, gone to her first non-sensory movie or show, taken her first shower where she actually stood under the water…and the list goes on and on.

Five years ago, this little girl embarked on her journey as a dancer but it was also the year she embarked on this journey of self-awareness as a person living with SPD. So many people are always giving me the credit for her success, but when I look back, I feel that I really had very little to do with it. She is the one who has completed five years of therapies, doctor’s visits, and evaluations. She is the one who has taken the tools and coping strategies she has learned and implements them when needed. She has been able to push herself past the point of discomfort more than any person I know and, even when pushed too far, she has gotten back up and started over again. She has learned to vocalize when she needs to bow out, regardless of what anyone around her may think.

This amazing girl was born with passion, determination, empathy, and compassion for others. These are qualities that cannot be taught. In exchange, she had to learn how to train her brain to get used to the environment around her…something most others are born being able to do. She may not know it yet, but she was the one determined not to let SPD get the better of her and she has not only succeeded, she excelled.

The reason for most of her success in life comes from those innate qualities I had nothing to do with. She was given to me that way just as she was given to me having SPD.  So, I may have been the one to get her evaluated and take her to therapy sessions but she is the one who internalized everything she was taught and applies it on a daily basis.

Dance is something my girl does from the heart..you can see it when you watch her. It is the reason she has stuck with it for five years, even when she struggled with the overstimulation that came with it. She will always be someone who leads with her heart. It will be her greatest asset but also, at times, her greatest weakness.  I know because I have seen this in her already and also, because I realize, I am a lot like her.

Five years ago, I didn’t know what the future had in store for us and I worried about the kind of life my child would have because of this obstacle we knew nothing about. Five years ago, our story had just begun. Now, I look forward to what the next five years bring..and the next five after that. But no matter where our girl takes us, I do know one thing for sure. My girl will continue to approach life with the same determination and passion that has driven her to overcome anything life has thrown at her. She will fall, and before I can stumble over to help her, she will already be on her feet back at it again.

So, just as those 99 tokens still sit in our house as a daily reminder of SPD, this Five Year Trophy will sit right next to it..standing taller and overshadowing that tiny plastic cup that symbolizes my girl’s greatest challenge just as my girl’s greatest qualities now outshine any difficulties brought on by having SPD.

“There is freedom waiting for you,
On the breezes of the sky,
And you ask “What if I fall?”
Oh but my darling,
What if you fly?”
Erin Hanson

Surviving Disney With A Sensory Child: Our Hits and Misses

This past week our family achieved our greatest sensory milestone to date…our first trip to DISNEY WORLD. For years, this trip was never a consideration. Despite my daughter’s love for all things Disney, she wanted no part of it. The mere mention of a plane ride was enough to turn her off let alone the rides, loud noises and the congestion of large crowds. As a family, we made peace with the fact that Disney World was not in the cards for us so we never gave it a second thought. We had watched our daughter struggle through local street fairs and get anxious over riding a carousel. However, this past summer she began to talk about Disney a little differently. More of her friends were taking trips and reporting experiences of fun, fantasy and so much more. She IMG_4031would relay their stories to me with wide-eyed excitement and curiosity, not terror and dread. At the same time we were watching her become more successful at withstanding overstimulation and, for once we began to give legitimate consideration to taking the Disney plunge. By September I had gone back to work full time and all the stars seemed to align just right. For the first time in our sensory driven lives we all felt ready to tackle Disney World. And, boy, are we glad we did! We could not guarantee that this trip would be a total success but felt that the time was right to give it a try in the best way we could for our girl. So, I thought the best way to support any sensory family considering a Disney trip was to share the way we carefully and methodically planned ours.

-Forget the surprise trip: There is nothing I love seeing on social media more than videos of friends surprising their kids with a trip to Disney World. The look of pure excitement as these little ones find out that they are hours away from the vacation of their dreams brings happy tears to my eyes. However, we are not the typical family and if we were going to have any chance of success with this trip, surprising our daughter was not the right way to approach this. So, before booking this trip, I sat down with my daughter and we had a serious discussion about Disney. We listed the pros and cons of the trip. We went through video after video of every Disney experience I could possibly think of to show her what she could expect and we picked out exactly the things she wanted to do. The end result was a wish list of Disney experiences she was excited about..a list far longer than the things she wanted to avoid. So, we may have missed out on the experience of surprising our kids with this trip but what we got in its place was far more memorable..months of planning and prepping the perfect Disney experience for her and her sister. From the time we booked the trip until hours before we left, she and I indulged in this trip 1,000% It was a bonding experience like none other. Seeing her face light up with each plan we set and the nights we would stay up and snuggle over the Ipad as we laid out our plans are memories I will never forget. If I had to do it again, I wouldn’t have it any other way. This trip was a collaborative effort that brought us closer together.

-Stick to the plan: By the time we left for Disney we had a carefully planned itinerary of every ride, experience and attraction we were to take part in that were given our daughter’s stamp of approval. She and I both did our research and carefully designed a Disney vacation that she was comfortable with. For the most part, we did not veer from the plan, making our trip a great success. However, at one point during our visit to Hollywood Studios, we had some extra time in our schedule. So, rather than stand around, I suggested we ride “The Great Movie Ride” to kill some time before our next scheduled event. I had been on this ride many years ago and didn’t recall anything I felt my daughter could not handle. But, the minute I brought up this idea, my daughter immediately tensed up….fear of the unknown had quickly taken hold of her. I pressed on, insisting she could handle it but, after more than 15 minutes waiting on line, she broke. She began to panic and cry that she was scared and didn’t want to go. So, I rallied the troops and we ran out. The trip had been so successful up until this point that I had convinced myself she could handle more than she could. It was my mistake and I quickly learned that the only way to survive this trip was to stick with the plan my daughter knew and was prepared for.

-Provide concrete choices: By the middle of the week I could tell that the long days, late bed times and brutal heat were starting to take their toll on both girls. On Wednesday we began at Hollywood Studios before the park opened. We had gotten through three planned activities before noon and had a couple hours to spare before our next planned event. So, I asked my girl if she wanted to ride it out and stay and of course she said yes. Except, I know her and didn’t believe her. She looked wiped and so did her sister. And then I realized that things that are open ended never worked for her. When faced with an open ended question she is inclined to try to find the “right” answer rather than saying how she feels. She has this fear of not saying the right thing so instead says what she thinks someone wants to hear. Soon enough I came to my senses and asked the same thing of her but provided her with options. “Do you want to stay a couple hours to see the show or go back to the hotel and go in the pool?” She immediately chose the pool which is what I knew she would pick. I could tell she was tired. I could tell she had her fill and rather than be rigid and try to force what I had planned upon her, I took her lead and did what she wanted. So we left, had some fun in the pool and spent the evening at Downtown Disney shopping and relaxing with not a meltdown in sight.

-Come prepared: Knowing that this trip would be overstimulating, I had to come up with ways to make sure my daughter’s sensory needs could be met. In doing research I learned that Disney does not sell gum anywhere on their property. Since this is one of our “go-to” sensory tools, I stocked up on gum and brought more than enough of a supply to get us through the week. I also had her choose which fidgets, tools and comfort items she felt she needed and kept them in a baggie in her carry-on backpack for easy access. For the most part she got through the trip with nothing more than a few pieces of gum. However, some of the longer days we had, I would notice her start to get very fidgety. So, I was sure to keep an elastic hair tie on my wrist at all times. When I noticed her getting restless and overstimulated I gave her the hair tie to wrap around her fingers. This little tool instantly brought her the calming input she needed. I also changed up the schedule of our days a little to incorporate some pool time in the middle of the day. Swimming is such a calming activity and provides so much sensory input in a fun and natural way. It was the perfect mid-day sensory activity for all of us!

-Be honest, practice coping skills and talk out the tough stuff: One of the things I worried about most was the plane ride. I knew this was something my daughter would struggle with, especially during takeoff and landing. I wrestled with how to handle this for months and, at the 11th hour, decided that honesty was my best policy. I explained the trip as best I could, telling her that the take off would be very fast and bumpy. I told her that her ears may pop and cause her discomfort but that chewing gum, swallowing and drinking through a straw could help her. In the days, hours and minutes leading up to the flight I would constantly ask her how she was feeling about it. She would always say the same..that she was excited but nervous. When the time came, she reacted as I had expected. When we took off, she panicked and started to cry. My husband and I held each of her hands and talked it out with her, telling her that she was brave and doing great. As we talked we saw her taking slow, deep breaths..a coping skill she has been taught to get her through any anxiety producing experience. Soon enough, the plane leveled out and she was fine because the experience had happened as close to the way she was told it would and the fear of the unknown was no longer. For the flight home she was a champ…not a tear or even a whimper. When we got home I asked her if she would ever like to go on a plane again and she replied, “Yes..it was a little scary the first time but going home was not that bad.” She couldn’t have been more proud of herself and neither could I.

The Disney Guest Assistance Pass (and other services for guests with disabilities): One of the benefits that Disney supplies is a pass for people with disabilities. The benefits of this pass adjusts the wait times for rides and attractions for those with a disability who may have difficulty waiting. Years ago, this pass was easy to come by until people without disabilities found ways to obtain a pass, abusing this service that was meant to help those who truly needed it. This is because Disney can’t legally ask for proof of a disability and, as a result, they have since been more selective to whom they grant the pass. We did not feel the need to obtain this pass for our daughter. She is at a point in her life where her extra needs do not truly inhibit her daily life and we got along on our trip just fine without it. However, I felt it important to mention for any of you who feel your child could benefit from this service. To obtain the pass you can visit Guest Relations prior to entering the park. In addition to this pass, Disney has a host of other services to meet the needs of those with varying abilities. During our week in Disney we encountered so many guests of various abilities. I applaud Disney on their efforts to bring magic to the lives of people of all abilities. For more information on the Guest Assistance Pass visit: https://disneyparks.disney.go.com/blog/disney-parks-disability-access-service-card-fact-sheet/

For other services for people with disabilities: https://disneyworld.disney.go.com/guest-services/guests-with-disabilities/

-Sit back, relax, and enjoy the magic: The thing that made this trip the most enjoyable was watching both my girls fully immerse themselves in the magic and wonder that is Disney. Years ago, I would have set unrealistic expectations of making this trip “perfect” but, as I continue to raise this extraordinary child (and her equally but differently extraordinary sister) I realize that letting go of perfection is the key to my happiness as a parent. Sure…there were meltdowns, complaints and the occasional tears on our trip but, I have stopped myself from letting these normal occurrences of child rearing mar all the joy that having children has brought to my life. This trip was quite possibly the greatest experience of my parenting life..not only because it marks a significant victory in my sensational girl’s easily overstimulated life but it was an experience where I got to leave the stress of my adult life behind and witness my children indulge themselves in a magical fantasy world where, for a short time, their dreams really did come true.

 

“Laughter is timeless. Imagination has no age and dreams are forever.”

-Walt Disney

 

My “Non-Resolution” Resolution

A new year..a fresh start..the day we all make promises to be better, healthier, more productive people. I don’t know about you but, every time I have ever made a New Year’s resolution, I have failed to follow through long term. Why? Well, for me, it’s because I make these promises during this bliss-filled period of holiday cheer..those few days between Christmas and New Year’s when life has slowed down a bit and the daily grind of our usual routine is put on pause. So, I start to eat better, I approach my family with more patience and I start a multitude of projects that will prove that I am more productive and creative than ever before. Then, a few days later, life resumes its normal pace and I am instantly back to being short on patience, overwhelmed by a ton of untied loose ends with the unending feeling that I am spread way too thin. Immediately following comes the guilt of falling short which I excuse by convincing myself that these goals are simply unattainable because life is just too hectic.

Once I had my first child, my New Year’s resolutions always revolved around what I could do better for her. When I realized she had extra needs, I became determined to be the mother who rises above these challenges with grace, dignity, and infinite patience. I equated being the perfect parent to giving up 100 percent of myself to my child without ever making a single mistake. When blessed with a second child a few years later, I found myself trying to give 100 percent of myself to each child 100 percent of the time. This is obviously an unattainable goal but I never realized that. Still, I was far from perfect and it was starting to feel like the more I tried, the harder and faster I fell.

The year 2015 was a turning point for my family as I returned to teaching for the first time since becoming a mother. It was a fast and unexpected change but something my family needed so I accepted without hesitation. I didn’t have time to figure out how I would keep trying to perfect being Supermom when I would now be spending much less time with my kids. But, I started my job and instantly fell in love with it. Special education is something I am passionate about as both a teacher and a parent. I work with great people. I have amazing students. My life has more balance. I am a happier person and my children are reaping the rewards. I traded quantity of time with my children for quality time and we are all much better for it.

So this New Year I no longer feel the need to resolve to be a better parent or a better person. 2015 brought amazing opportunity for our family but it also came with several unexpected reminders that life is precious and time is not guaranteed. I finally realize that the chance to start over does not come with each New Year. Every day I am given is my chance to do better than the day before..with my kids, with my job, with my life. I can teach my girls that every mistake I make isn’t a sign of weakness but rather an opportunity to learn how to do things differently to get a better outcome. I can instill in them that happiness must truly come from within and show them that perfection isn’t the key to success in life. Perseverance is.

I am not the perfect parent. I never will be. But as long as tomorrow comes I have the chance to start fresh…to judge less, to learn more, to make change, and to be more patient and understanding. Each tomorrow is not my chance to be perfect but rather another opportunity to get as close to the best that I can be. After all, you can’t reach a long term goal without short term goals that measure your progress along the way.

So, every morning I open my eyes I will be thankful for a fresh start. I will take each day as it comes. I will understand that if I set unrealistic expectations for myself and others then I will constantly be disappointed. I know now that being a good parent doesn’t have to mean giving up doing for myself. And if I pass along any of this to my children than I will know I have done my job..not perfectly but to the best of my ability and with only the best intentions.

“Yesterday’s the past, tomorrow’s the future, but today is a gift. That’s why it’s called the present.” –Bil Keane

 

 

How to See My Child’s Invisible Disability

There is that old saying that seeing is believing and, once we are able to believe in something, we begin to understand it. But sometimes in life there are things that exist that are hard to see and, in the last six years, I have come to realize that my daughter’s disability is one of those things. Prior to being diagnosed with ADHD and SPD my daughter was labeled everything from spoiled to attention seeking. I was called over reactive and lacking in discipline. So, when I finally got her diagnosed I thought I finally had the proof we needed for people to understand her. But, even with a diagnosis I still find people struggling to understand and  that’s because her disability is hard to see…unless you look. Not glance..but really, really look. So if you are curious as to what I am asking you to look at, here are some of the subtle signs of her disability that you might never notice unless you really take a good, long look:

If you watch my daughter enter a room, you will notice her eyes dart around trying to take in everything around her. She may walk away and explore, taking inventory of all the things her heightened senses have to process. She may be standing on her toes, stiff and rigid as it is her body’s natural instinct to be on high alert. If she can tolerate what is around her, she will slowly relax and her body will soften. Her eyes will adjust and become focused on what she is doing or who she is talking to. However, if the environment is too much for her to process she may stay close to my side. She is social and friendly and engaging with peers is often enough of a distraction away from any discomfort from the surrounding environment. If she experiences down time, her attention often shifts back to the things around her that she cannot process. She will continue to participate but may self soothe by chewing on her shirt, hair or fingernails. She may ask me for gum because she has learned that it is a more appropriate way to provide herself the comfort she needs. If she becomes overstimulated, you may notice her talk loud and fast. She might run around, jump or climb on something she isn’t supposed to as an attempt to satisfy the cravings for input that her sensory system needs. In a group, she is quick to jump in but may slowly find her way to the outskirts, playing on her own. She will keep herself at enough of a distance so she can blend in without getting too close to any unpleasant sensations. Typically, she can get through most situations successfully but there are times when she begins to lose hold and, rather than meltdown, she slowly unravels. You may hear her say she is hungry or tired. This is her way to disguise the fact that she has had enough and wants to be removed. She may suddenly start to get frustrated with her peers and complain that she isn’t getting her way. This is not a child simply being bossy but a sign that she is grappling for external control because she is losing her internal control.

None of these things sound very alarming and separately they aren’t. They are all behaviors that any child may display. But, for my child, these behaviors are parts of a disorder that can disrupt her life at any moment. She has learned to make calculated decisions based on her level of tolerance so she can participate in things that may be difficult for her. She has experienced a natural maturity in her sensory system that, while delayed, has enabled her to endure overstimulation for longer. There are some environments she has learned to tolerate as we have had to expose her to uncomfortable situations little by little so she can build an immunity to the sensations that alarm her. If she does eventually meltdown, it will be long after you see her. This is her release from all she has reigned in that particular day. At the age of six, she has learned enough about her disorder that is appropriate for her age so she can be confident in who she is and how she feels. But the behaviors you will see, big or small, are signs of distress, self soothing, or both. Years ago these behaviors were not so subtle and made her disability more visible but, still, she was misunderstood. We didn’t know how to be proactive back then and, as a result, these little behaviors snowballed into something big…something that could easily be judged as misbehavior or poor parenting.

My daughter has worked hard to manage the role her disability plays in her life. It may be small and subtle but it can get big and loud and it takes a lot of energy for her to reign supreme against her body’s natural “fight or flight” reaction to her environment. So, why would I want to draw attention to something we worked so hard to minimize? It is certainly not because I want my daughter’s disability to define her nor is it my way to make excuses for a spoiled, ill behaved child. Rather, it is quite the opposite. There are millions of people in the world who live with an invisible disability and I believe my daughter is one of them. These are the people who struggle with something that isn’t easy to see on the outside. However, these people have to consciously manage this extra set of needs just to get through the average day. That is a large responsibility for anyone, especially a child. Some days are better than others and, when they struggle, they are easily misjudged. They are also the people who don’t always get the support and acceptance they need from others to be successful and confident with who they are. In reality, there isn’t a person on earth who doesn’t want to be embraced for all that they are..good and bad. Yet, we are all guilty of judging something simply because we don’t understand it. So, in writing this, I hope that we can open our eyes to our own challenges, and in turn open our eyes to the differences in others. As my daughter puts it, we all have our “tricky thing.” Hers is SPD and she is ok with that. So am I and, although you may not fully understand it, we hope that you are too.