I feel physical pain when I look at this picture.
This is hard to write about.
Tonight I walk the line.
Tomorrow I probably will too. I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance.
I walk the line between complete acceptance of Evan’s Williams Syndrome, almost to the point of celebration- and complete worry, disappointment, and concern for his differences and how they will affect him throughout his life.
When Evan giggles and jumps in his car seat peering out the window, simply thrilled to be waiting for me to bring in groceries and to see me peek out of the door to see him- I celebrate his WS. I celebrate that he is filled with joy, simple, unadulterated joy about 80% of the time. When he whispers “I la you” before I leave his room at night- three words we have worked on for over a year, I celebrate. When the director of his preschool writes me a note, thanking ME for allowing them to be Evan’s teachers because of the light he brings to their lives- I celebrate. (I also blubber like a weepy fool- but that is another story)
When I watch video of adults with WS lamenting how difficult their high school experiences were due to bullying, I am concerned. When I hear an adult with WS say to a newly diagnosed child’s father, “I am so sorry to hear she has WS, it can be really hard,” I hurt. When Evan greets someone with a happy “Hi!” and then repeats it over and over and over no matter how many times the person responds, I feel a little weird inside. I feel guilt because of course I know he means well, he just wants the positive interaction- but I also know the recipient is wondering how to respond. And then I start thinking about what will happen when he is in middle school and he greets others with no abandon. When I listen to other children Evan’s age and I realize how far behind he is with speech and language, I can feel disappointed. I live in a little bubble sometimes, where Evan’s progress is only compared to Evan’s progress. Until, it’s not anymore.
When I hear E singing on the monitor, singing, “The Water is Wide,” and then humming the parts where I hum because I do not know the lyrics, I feel joy. Pride that my son has Williams Syndrome. That he has an emotional connection to music that even I cannot comprehend. When I talk to others and educate them about WS, I enjoy talking about it, I feel pride in every detail that I share.
But then I can be quick to say, “But don’t forget, Evan is not defined by his diagnosis. He is Evan first, and he just happens to be missing a 25 or so genes out of over 20K that we each have. It is just a small part of what makes him Evan. ”
I just keep walking that line.
The line between celebration and worry. The line between pride and guilt.
I can say that I am on the side of celebration far more than I am on the other side. I feel very blessed for that to be true. But the other side exists. And it can be an ugly, dark spot to step into.
That is why I walk the line.
Striving for Celebration
I can hear Evan in my mind singing along with me, “Hide it under a bushel?”
he exclaims with his hands awkwardly banging together in insistence.
“I’m gonna let it shine…”
Recently I made a decision to take care of myself in a more deliberate way. If you know me personally, then you know about it first hand because I have a hard time not talking about it. I decided in December to do a 14 day sugar detox. I signed up with a friend’s healthy living business- Smart Sexy Living,
and cut out gluten, refined sugars, and processed foods for 14 days. It was harder than I could have imagined and more rewarding than I ever thought possible. It taught me so many things about myself and how I look at food. I don’t want to make this whole post about my new lifestyle. But I do want to share why I have made this choice and why I am continuing to eat differently and treat my body better. For the past few years, since becoming pregnant and then a mother- I have had this nagging feeling like I need to take better care of myself. That I need to put myself first, at least as much as I can with all the different hats I wear.
I realized that I have a little issue with lack of control.
Just a teeny little one.
Don’t we all, though? We get upset when our child is sick, because we cannot heal him. We get upset when our car breaks down, because now it is out of our hands and in the hands of a mechanic. We get frustrated when someone cuts us off on the highway because we were minding our own business and following the rules, darn it! It is out of our control.
Out of my control that every day I can try as hard as I want to dictate what is going to happen to myself and my family but some time things are just not up to me….
But I realized, I can control what I eat. I can control what food and drink items I bring into the house. I can control how I look at food and how I treat my body. Those things ARE in my control. In fact, no one else dictates what goes in my mouth. As much as I like to blame outside influences- like advertising, or bad work days, the treats in the teachers’ lounge, or hormonal inbalance (that happens EVERY darn month!)- in reality- I still am the one in charge of my diet. And when I say diet, I do not mean diet like counting calories, points, following a set plan- I mean what foods and drink I consume.
It feels good.
It feels good to take care of myself in this way. To allow my light to shine. To realize that even though Evan, Todd, and my students come first so many times during the course of my day- if I am caring for my body by eating well, then I am actually able to take better care of the people around me. And in turn, I feel more confident about letting my light shine.
After the detox, Heather, the creator of Smart Sexy Living
wrote me an email asking if she could quote me for a testimonial. She quoted one of my emails to her as saying, “A family friend told me that I needed to quit my job and become a model.”
When I received this email from Heather, I balked at the idea of her using that quote. I felt embarrassed and felt as though I was bragging. She responded to my email saying she would gladly take out the sentence- but she then said, “not to be woo-wooy- but let your light shine!” and she included this quote:
“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.“
It really resounded with me. Why are we so afraid to share our successes? To let our beauty shine through for everyone to see? We encourage our children to be who they want to be, to be proud of what makes them exceptional, what makes them beautiful inside and out. Why are we afraid of it? What kind of an example are we giving our children if we hide behind our beauty and our unique abilities?
By cutting out gluten, refined sugars, and processed foods (I’m not perfect, but this is what I am trying, anyway)- I am letting my light shine. And it’s about time.
How can you let your light shine?
You know you are awesome, don’t hide it!
Where has the time gone??
My stomach lurches. My back is dripping with sweat. I lunge after Evan time and time again to make sure he does not run down the aisle of the theater. I hold his hand and let him lead me to the lobby doors. He loudly shouts, light! light! light! and insists on getting to the “light.” Against my better judgement, I take him into the brightly sun lit lobby and let him run around, making sure he doesn’t touch the trash can, go up the steps, touch the other patrons, run out the front door, you name it. I feel my lip trembling and the warmth of tears touching the corners of my eyes. I feel jealous of the other parents sitting in the theater with their child who is happily watching the show. I then feel guilty for feeling jealous. This is his field trip, and not only that, but it is a live musical performance. I had been incredibly excited for this day, to share something I love with my son who has an uncanny connection to music. I was SURE he would love the experience. I hear familiar music ringing in the background. A song Evan knows! I was sure he would be happy if he heard the music, I was sure I could sit back down in the seats and join his class for the last five minutes.
I was wrong.
I tried to sit, and E crawled up my chest, and tried to get away from me yet again. He carried on loudly, protesting and wriggling all over our laps. Todd leaned over and said that we might as well leave, since it was almost over anyway and Evan clearly did not want to be in the seats. We were fighting a losing battle. We scrambled to gather up our things and get out of there with some sense of dignity. The parents, teachers, and children from E’s school watched the show intently, with popcorn bags and drinks in their laps.
His car seat buckled, his bags strewn about the back of the van. I had to go to work to get in a half day and Todd was bringing him home. I kissed Evan goodbye and felt my eyes film over. Todd asked if I was okay but I couldn’t muster the words. I realized that my reaction didn’t seem to match what had happened. Evan is a two and half year old. Two year olds don’t necessarily want to sit for any length of time. Why did this hurt so much?
I walked through the stinging cold wind and felt my cheeks burn. My stomach was tied in knots. All I wanted to do was sit alone and cry. It had been a while since I felt that way. Since I felt like we were outsiders. There was a sea of happy, healthy children who could watch a show, communicate their needs clearly, and be engaged. And Evan was hanging out in the baby pool, splashing about, not caring if he was a part of the sea or not.
My friend came over with her son over the holidays. Her son is only a few months older than Evan. They are buddies. We shared pregnancy adventures, new mom doubts, laughs, and tears. She is one of my dearest friends. While our boys were infants, her son would achieve milestones months and months before Evan.
Buddies for life
It made sense at the time because he is ten weeks older. I never worried or focused on it. I remember thinking, Evan would get there in his own time. After receiving E’s diagnosis, the gaps became wider. Well…actually they always were wide, I just accepted that they would not close in like I had thought they would. Her son is extremely verbal, always chatting,using multi-syllabic words, complex sentences. He tries to talk to Evan and Evan bounces happily in front of him, gazing at his buddy with awe and love. He often will try to say something, but it comes out more like a babble because he is so excited. I love having them together, since they have known each other since they were in our bellies.
I remember this day very clearly. Evan wanted to drink the water the whole time. 🙂
But I would be lying if I said it doesn’t put me right back to the baby pool-big sea situation sometimes. I watch Evan do his own thing, happily splashing away, unaware of any development gap or difference. Repeating a string of sayings over and over again. “Here we go!” “All aboard!” “Light on?” I love hearing our little guy talk. It’s just a little different when you have an example of age appropriate speech right in front of you. My friend’s son uses interjections, adjectives, a rich vocabulary. I could listen to him talk for hours. I videotaped him counting a long time ago when I was babysitting him because I found it amazing to hear him count. Evan is using two word combinations, and he only really adds on the word please to make the second word. And who cares, right? Certainly not Evan.
E happily splashes in his baby pool. His smile does not fade when another child expresses his or her need more clearly than him. He does not notice that he is wearing orthotics and still using a wider gait and walking on his tip toes. He does not mind that the children at school are sitting in their chairs without any straps and buckles and he is strapped into a booster seat to sit at the table. He does not catch the second glance the mom in line gives him and me when I say he is 2.5 and he is shouting vowel sounds in the line at Target.
Evan loves the baby pool. He loves when others allow him to enjoy the baby pool. He also loves when you jump in with him. Play with him on his level, see the water through his eyes. When he is allowed to push buttons for a little while. Allowed to shout church hymns at the top of his lungs in the grocery store. (only his mama knows they are actual songs) Allowed to turn on and off the light switch a few times every time you enter the room. Allowed to chase the stroller so he can spin the wheels for a little while.
When I was a little girl, I could spend hours in the baby pool by myself. Splashing around, using my imagination to pretend I was floating in the ocean, that I was a mermaid waiting to be rescued. It’s not a bad place to spend some time. If Evan doesn’t mind it, there is no reason why I should be concerned. Doesn’t mean he won’t still receive swimming lessons or that he will not be asked to try out the deep end at some point. But for now, the baby pool is just right for him.
Splash. Smile. Release.
So it has been a coon’s age since I wrote last. (husband likes that saying) Okay maybe not that long, but since mid December. I thought I would be brimming with things to write about over the holiday break. The magic of Christmas morning, the quiet hope of Christmas Eve night. Evan’s day time hippotherapy session, family parties, etc.
All of those things did happen, but….I felt a little harried and tired when I did have the time to blog. So instead I chose to sit in the playroom with Evan or catch up on DVR with Todd. Or spend an hour in the kitchen cooking or baking. (more on that later-you can pick your chin off the ground now) And I am glad that is how I tried to spend the little bit of free time I did have while off from work. But my fingers have been aching to write, and I’ve been spending a lot of time catching up on other blogs, thinking, “I really need to get back into the groove!”
Hence, here I sit while Todd is playing with Evan in the other room on his new Ipad. Todd has been fighting a nasty chest cold for about three weeks now. Maybe longer. I asked him if he could monitor Evan on the Ipad for a little while so I could have some blogging time. Of course he complied, but I can’t kick the feeling like I shouldn’t have asked. Like I should have just gotten Evan up from his non-nap and put my alone time off for a little while longer. I often feel that way. That I should leave a gathering early to get home, because Todd is caring for Evan. Or if I go to a workout class, I feel like I am being a little neglectful as a mother and wife because I am doing something completely for myself.
So I know most of you are probably thinking, get off it, Erin. You know you deserve your own time- we all do. Happy Mama means a happy child, etc. etc. And I do know that. I know it like I know I shouldn’t speed while driving. I know that brussel sprouts are good for me.
I know these things but I don’t necessarily live them or believe them deep down. I love this new Jazzercise class I am taking. LOVE it. The teacher is a friend of mine that I met through an early intervention program where our sons both attended. She is spunky, energetic, and a very good instructor. I leave that class sweaty and feeling lighter in my orthopedic sneakers. I’m kind of not exaggerating with that one. The first class I took she said something like, “this is your hour, right ladies??” and I thought, you know what, yes, this is my hour. If I want to jazzercise with it, I can. If I want to reorganize Evan’s closet, I will. If I want to read endless recipe blogs, I will.
And this is why I decided that I need to Release.
My 2014 word is “Release.”
I’ve never done a theme word before. Too hokey maybe. Resolutions only last about ten days. But I thought, I want to try. I want to give myself a focus. So I thought on it for a few days. What would be a good word to keep in the back of my mind as I face new experiences this year, both good and bad. I kept coming back to the idea of letting go. Letting go of guilt. Letting go of worry. Letting go of doubt…. of insecurities, of pain, of comparison.
Like when you take a deep breath in with your nose and fill your stomach with air and then release it slowly, for at least five seconds.
That is what I want to think about this year. Releasing. So that there will be room in my heart and mind for better things.
and all of these:
I know there will be plenty more of these moments in 2014, and I plan to hold them in my heart and mind and try my darndest to RELEASE the rest. Will you join me?
Scrolling back through pictures of Evan in his first year, my heart hurts a little. It hurts for a number of reasons. It hurts because I can see the features that indicated he had Williams Syndrome. The blue sparkly eyes, the wide and flat nasal bridge. The memory of his floppy limbs. At the time I had no idea. Evan was over a year before we received his diagnosis.
I’m sure some of you are thinking, “what does it matter now?” Truly, it doesn’t. And 92% of time, (I did extensive research to get that percentage) I do not look at the words Williams Syndrome and feel anything negative. In fact, most of the time I see it as a true gift. That my son has this rare condition that causes him to have extreme empathy and compassion. It causes him to smile all day long. It causes him to sing at the top of his long and care very little who hears it. I can drop him off at preschool and there is no crying. He toddles away from me happily and forgets I’m there.
It hurts because I see my father’s rosy cheeks and ear to ear grin in Evan’s chubby baby face.
It hurts because I can remember the difficult time I had post-partum and how I longed to see the beauty in motherhood.
It hurts because I know my little boy is growing up. I know he will enter the public school system soon. That our first meeting with the child study team in our school district is just days away.
Halloween 2012 17 months
It hurts as I recall the first time Evan was evaluated by the early intervention team. How my stomach lurched each time they asked Evan to complete a task and he would just look at them expectantly, hoping they would play with him but not completing the expected task. Not knowing that he was being tested.
Please Touch Museum March 2013
Then the hurt turns to a knot in my stomach. A knot of joy intertwined with struggle, intertwined with pride, intertwined with wonder.
My, how far Evan has come. From this little floppy baby who could stare at a spinning wheel for a half hour straight. From this bouncing bean who loved to leap in his jumper exersaucer. From this eager boy who wanted to communicate with us so badly but could barely get out the word “more” for the longest time.
Our little Jerry Lee 11 months
This past weekend, I woke up late (glorious glorious thing that was) at my in laws house to find everyone else up and playing in their living room. Evan saw me, stopped the game he was playing, smiled a huge smile, came over and sat in my lap. He gazed up at me and just very confidently said, “Mama.” First time ever. Not the first time he said “Mama,” but the first time he spontaneously did so, without anyone pointing at me or prompting him. I can remember months and months ago saying to a friend, “I just can’t wait until he greets me and says my name in excitement.” It happened!!
The following night from his crib he whispered, “Ahhh you,” “Fo-eb-a”which translates to “I love you, forever.”
All on his own.
My Christmas gift has already been unwrapped. And it’s a gift i can unwrap every day. So blessed.
I’ve been a fan of Kristi’s blog, Finding Ninee for quite some time now. She is side-splittingly funny. Funny in a way that feels real, honest, and filled with heart. She is also serious in a way that I understand. One of my favorite features is called the Our Land series. She features guest posts that focus on acceptance, differences, and all the struggles and triumphs in between. I am so honored to be sharing in the series today. I decided to write about the surprises that have come along with putting Evan in school for the first time. I spent many hours this summer worrying about how he would do, if he would be accepted, if I would be able to let go enough to allow his teachers to do their jobs…..the list goes on. I wanted to share to let other nervous and scared parents know that it can be okay. More than okay.
Check it out over at Finding Ninee today! Leave Kristi some love too!
The Itsy Bitsy Purple Spider
budding rock star
It’s no secret that I over-think things. You don’t have to be my oldest and closest confidante to know that I over-analyze until I’m blue. Just read a few blog posts.
I try my darndest to err on the positive side of things, looking at the glass as half full. But that glass can tip dangerously to the side sometimes, and the water falls out drop by drop. And with it, my positive attitude.
I set my alarm 20 min ahead, I lay out my outfit, empty the dishwasher the night before. I line up the many bags I take to to work and to drop off Evan at school. Evan is sleeping soundly, and I close my eyes for a peaceful night’s rest.
The glass is half full, looking plentiful and teeming with water.
Overnight I lie awake listening to the sounds of my dog absentmindedly licking her paws, my husband snoring, and Evan talking in his sleep. My alarm goes off and I realize I have only slept about 3 hours total. I realize Evan’s best cup is in the backseat of the van, and I forgot it was my brother in law’s birthday, and shoot, I didn’t get more Walmart brand generic Pediasure on the way home from work the day before. I run around trying to get ready but I get distracted about six different times because my energy level is so depleted from no sleep. The glass starts to tip to the side.
I drop Evan off at school, and I realize it was “Wear Brown” day and he is in orange. I write a hastily scrawled note to Evan’s teacher to let her know that he has physical therapy that day at school. “Should have told them that earlier in the week so they could have prepared….” I think to myself. I run out the door to get in the car because I have a meeting at work that I am already 5 minutes late for and I haven’t even left Evan’s school.
After fumbling through my 43 different keys on my key chain to find he one that opens the school door, I run to the meeting. My administrator is already speaking and there are no chairs. I kneel on the floor to avoid looking conspicuous which ends up making me stick out all the more.
Head, Shoulders…knees and…
I try to save face by blaming my lateness on traffic, and a wardrobe malfunction with my son. Which is partially true but ends up sounding very pathetic and false when I spit it out.
Three of my students come in from morning recess complaining of someone “butting in front of them” in line. One will not let this go, interrupting me repeatedly to say how unfair it is that he would lose his place in line because of someone else making a poor choice. My cell phone rings entirely too loudly on my desk, it is one of Evan’s therapists asking about a schedule change or the insurance company seeking missing paperwork I needed for possible reimbursement. I think about answering, but decide not to because the pledge of allegiance begins on the loudspeaker. I feel guilty for not answering. I would have felt guilty FOR answering.
But then there is this:
Our light. Our heart. The boy who can sing the same refrain to a song for an hour straight, putting different spins on the tune and intonation.
The boy who could barely pull himself up when lying in your lap a year ago, and now can do 20 sit ups on the exercise ball.
The boy who will say “I love you” (a very cute approximation anyway) if you just lean over him in his crib for an extra 15 seconds without saying a word. Letting him take his time to respond.
It doesn’t take a degree in rocket science to know why this guy was born.
To know why Evan is in our lives.
The glass never empties all the way.
Drops fall out but they find their way back in.
I don’t often delve into religion and spirituality on this blog. I would be lying if I said I hadn’t actively avoided it.However, I am a Christian, and I have definitely mentioned that fact. I am not ashamed, embarrassed or trying to hide my beliefs.
I have shared the awesome church experiences I have had in my adulthood and how it led to my becoming a Christian.
My understanding of God and the Bible is rudimentary at best, but I know what I believe. I just struggle with feeling like what I believe is the only way. And that is fodder for another blog entry.
Anyhoo….back to Charlie Brown. So Peanut’s A Charlie Brown Christmas has been a staple in my life since I was very little. I try to watch it yearly. Hearing Linus say, “That’s what Christmas is all about, Charlie Brown,” is a comforting and reassuring phrase to me.
Apparently it is to my son as well.
(This is not A Charlie Brown Christmas, just an picture example of how happy Evan is to read by himself)
Last year after Christmas I bought the book version that has several music and sound buttons on the side that coincide with the story. Each one plays a different tune or lines from the story. This book did not make the holiday boxes because I bought it in January. Instead it lives in Evan’s toy box but lately it has been living on the play room floor where Evan can access it with ease. I was in the kitchen preparing food recently when I overheard the Linus speech ringing throughout our house. Not once, but twice, and then a third time. I entered the play room to find Evan gazing at the book and listening intently. As soon as Linus finished the speech, he would push it again.
Evan could sit by himself and listen to that speech over and over again. He likes to lay down next to the book and listen. And this was not just a one day thing. He goes back to it day after day. He could push the music buttons over and over, or listen to all the different ones but he is choosing not to. He wants to hear Linus over and over.
Now hearing the speech has a whole different meaning to me. But the feeling of comfort is the same.
Thank you Charles Schulz.
So I sit here in quiet. Beautiful, thought-provoking quiet. I used to lament the fact that I never had time in our house by myself anymore. Todd and I have always been good about letting each other have our “me” time, whether that means going to an exercise class, going camping, blogging, out with friends, etc. But just by the way of scheduling and being a mommy- I never got the house to myself. Well wouldn’t you know it, going back to work actually provided me with not one, but two days where that happened. Even if just for a short while. It’s weird, I keep thinking I hear Evan on the monitor that isn’t even turned on. Since I am a teacher in N.J, we still get off for the annual NJEA convention in Atlantic City. This year since there was an election for governor, we also got off on election day. I decided Evan could still go to school, since he loves it so much, and this way I would get more done.
So I decided to spend election day working on insurance phone calls and paperwork that had started to pile up. In my crazy little head (actually the Gaynor cranium is not a small one), I had thought it would be a great day. A day that would clear my mind, and get all that insurance stuff off of my shoulders and some more money in our pockets from reimbursements to come. Oh Erin, silly, silly Erin. How quickly you forgot how incredibly frustrating it is to go through menu after menu of automated voices. How infuriating it is to speak to four different people at the same insurance company but only one of them seem to have an idea of what is what. How emotionally exhausting it is to realize how many therapies your child receives and how much it all really adds up to financially. And honestly, we do not have it that bad. I know our situation could be much much worse. But Tuesday afternoon, after about five hours of sitting at a laptop with two different phones and bills strewn around me, I felt myself start to crumble a bit. I popped on the beautiful piano music of Alec Sweazy.
|Can’t you see Evan in his kind eyes and smile?
I felt myself relax and the tears flowed a bit. Not in frustration though. In appreciation of Alec’s talent and hope for Evan’s future. Alec also has WS and he is handsome, talented, and honest. On his website he mentions the meaning behind some of his compositions. He says this about one song:
I’m Still Standing — “As a student in elementary school… being treated like a scab… other students picking on me and beating me up. It hurt a lot. I tried to let people know of the threats, calling me names, pushing me down stairs. It was like having monsters with laser beams for eyes coming after me, destroying me from the inside out.”
Of course this tears me up from the inside out too. Some of my worst fears are of Evan being teased and bullied.
But then he also writes this about another song:
Long Time Coming — “This project. To have goals for yourself in life… and the CD is probably the biggest thing I’ve done in my whole life. I’m pretty sure I haven’t done anything that takes so much patience, doing things over and over again. To keep it moving takes many steps. Many people are needed to get a big project like this off the ground. Who would have thought, after the variety shows in junior high school, that this is where I would be now?”
Thank you Alec. Thank you for sharing your talent and your honest feelings. It scares me, but I know not to be driven by fear. It will get me nowhere.
Here is a little glimpse into how Evan reminds me not to fear. (There is no video, just audio)
He “gets it.”
at two and a half years old.
So lucky to be his mom.
So gosh darn lucky.
This weekend we took Evan for his hippotherapy evaluation. Yes, that means exactly what you think, he is going to do therapeutic activities on a hippo. Just kidding…..Or maybe you are thinking he is going to be hypnotized, ala hypnotherapy. Neither is correct, but don’t feel bad if you aren’t familiar with the term either.
Hippos is the English translation of the word horse in Greek. Thus, hippotherapy is the use of a horse in occupational, speech, and/physical therapy. (I did not know the etymology of the word until I started doing this blog entry)
|Not sure about this horse stuff, Mama.
Of everything we have tried, this was one therapy that I was super excited for, but I also had no clue how it would go, or how effective it would truly be. I knew Evan would enjoy being around horses and spending time with adults and young people at the farm. I also have a love of horses and I have ridden horses several times in my life. But I had a hard time imagining him doing well on a horse, and I wondered how exactly it would help him to progress. When he wasn’t walking- not all that long ago!, both his physical therapist and Dr. Mervis, the researcher we see in Kentucky, suggested that we look into hippotherapy. Dr. M’s exact words were, “Get him on a horse.” She felt it would help strengthen his core., which in turn would help with his language development and walking. I started looking into it last spring. I found a lot of local places that did recreational horse therapy, but not hippotherapy. Apparently they are similar but it is harder to get insurance coverage with the former because it is not done by a licensed therapist. I called around, asked questions, looked into our insurance and decided it would make sense to wait until the fall when we were back on my insurance, which has better coverage overall.
And then as luck would have it, one of my new warrior mama friends (who I practically cyber stalked-a story for another day) suggested this horse farm. She had taken her daughter here for hippotherapy and raved about it. She also was very happy with the support the therapist gave her as far as getting insurance to acknowledge the therapy and get most of it covered. Sounded like a win-win situation to me! So off we went to do a barn tour and then an evaluation was scheduled.
We set off to Brandywine Occupational Therapy
and the wonderful Miss Lauren. My mother went with me, which was very helpful. The occupational therapist asked a lot of questions and it was nice to have a second pair of hands to keep Evan close by while we were having him climb on the playground equipment and walk around. Her extensive knowledge in the area of occupational therapy is evident and it made me feel very at ease to know Evan was in good, professional, educated hands at this facility. She used technical terminology and offered reasons for things that Evan does, while also giving praise for different things he has recently started to do. It’s always heartening to know your child’s therapist really knows her stuff. And Evan’s really do.
At first, I was worried Evan was not going to dig the horse experience. He started this low whine when they put his helmet on, and he kept looking around like he wanted to anywhere else but at this farm. Then they had him use a mounting block (bc she thought he could handle it-which thrilled me) and got him up on the horse. He kept doing this low whine and squinting his eyes, like he does when he doesn’t like the food you offer him. My heart sank, because I really had such high hopes for him. (which translates to high hopes for me- I need to work on that) Luckily, as often happens with Evan, the waiting and anticipation of the activity can sometimes cause him to whine and get impatient. But once they started to move, and the horse began to ebb and flow beneath him, it all changed. After a few short moments he started to say, “Whee!” and “Neighhhhh.” His whole demeanor changed. He held on tightly and kept his back erect the whole time, not waivering at all. I thought for sure he would try to get off, or lean side to side but I was very wrong. The therapist started to try different things, like going diagonally across the ring, doing figure eights, and stopping and starting. When she would stop, she would ask Evan to tell the horse to “walk.” He just kept saying, “Neighhh!” Then she suggested saying, “Go, Vixie!” (the name of the horse) After two times modeling for him, he did it independently when she stopped!
I was floored. We are working hard on two word combinations, but I never thought he would do one so quickly, and with a new therapist, on a horse!!! But looking back, that is probably precisely why he did respond so quickly. No need for bells and whistles when you have horses! (thanks Aimee for that realization) He probably spent about 15-20 minutes straight on the horse with no signs of fatiguing. He was especially fond of saying, “Hi! How are you!” to the young lady who was helping on the other side of the horse. He didn’t tire of looking at he and batting his big blue eyes at her and smiling before shouting, “Neigh!!” all over again. The natural feeling of riding a horse is so significant for a child like Evan who seeks sensory input all the time. He loves movement, bouncing, being upside down, rocking, etc. And a horse provides all of that in a controlled, organized way.
Sorry for the shakiness, I was trying to keep up with them with my cell phone camera. If you listen closely at the end, you’ll hear Evan exclaim, “Vixie!”
So the biggest deal of the whole experience was when he had to get off the horse. She said “Ok, Evan, we’re all done now, we have to get off the horse.” He responded by gripping as hard as he could onto the handles and sticking his bottom lip out as far as he could. She pulled him off, handed him to me and he went in to full blown teary meltdown. He wanted to get back on her so badly. I can’t really put into words how this hit me emotionally. I can say I definitely welled up with tears. Not so much because I was sad for Evan, but more because I was so excited at how much he connected with the horse, and how he truly was sad he had to get off. Evan has such an easy going temperament. He does not throw a fit when I drop him off at school, in fact, he will walk up to almost anyone, saying “Hi!” and he does not seem to lament the fact that his mommy or daddy are leaving him. (believe me I know how enviable that is) But that also means he does not display other typical behaviors, like an affinity for things that mean something to him. So to see him feel true sadness because of how much he LOVED being on that horse, it just filled me up inside.
He kept saying, “Vixie, Vixie,” on the way home and I showed him the video a few times. So now when he sees my phone, he says, “Vixie, vid-ee-oooo”
I can’t wait to take him again.
And to see how she is going to work on self feeding goals on a horse.
Somehow, I trust it will work.