Go Toward the Fear

Isn't it odd how in the span of one week you can receive the same message over and over until you finally realize- oh, maybe the universe is trying to get my attention?

In the last week......here are some repeat messages I have received in varying forms from different messengers.



1. In my writing group last week, my friend J, said "go toward the fear"- this stuck with me all week.

2. Pastor G gave a sermon about Luke and used a simple fishing analogy on Sunday. He reminded us that fishing in the shallow end may be safe, but is limiting- but when you go fishing in the deep end, while risky, your reward could be huge. He charged us with "doing one thing a day that scares you."

3. A couple times this week Hannah has read and repeated the following saying that is on a framed poster in our house- "do one thing a day that scares you". Perhaps Pastor G has seen this poster? Trust me, she wasn't listening to his sermon.

4. I watched the Hallmark movie "Head of the Class" and it was about a real life story of a man with Tourett's Syndrome. He had thought and been told he could never be a teacher because it would be too distracting to students, but he applied anyway, and in the end taught his 2nd grade students so much more than math,reading-- he taught them about perseverance and facing fears-taking a risk. I balled my eyes out - darn Hallmark.

To the point- how often do we all trudge through life and keep going on in the same direction as the day before? Do we take enough risks? Do we face fear head on and live through the emotions, feelings and uncertainties that come our way? "What we resist persists" is the old saying. Going toward fear can mean facing whatever fear is holding you back- limiting you in some way. Some of us will immediately know what those fears are and others may have to take a deep breath and 'go deep' to know what they are.

Of course, Hannah comes to mind as I sit here and write this blog about facing fears. Talk about going toward fear. For a child with SM, every day presents that opportunity. The root cause of Selective Mutism is anxiety- a fear of speaking in certain situations, a fear of what others will say or how they will respond once they do speak, a fear of whether they are doing something right (perfectionist). These fears take hold and the child goes silent. The longer they live and accept this silence as a way to function/deal with their anxiety and their fears the harder it is for them to see a way out of it. This is also true for the rest of us- whatever our fear- the fear takes control and we feel powerless or paralyzed to face the fear.

In a few more weeks our beloved therapist, Melissa, will make the trip from NY to MN to work with Hannah again. This week will be alot of 'going toward fear' for Hannah. The classroom has always been the toughest place for her- yet, I think now that she has made so many strides this year outside of school and now in certain areas of school (recess, lunch, hallways), we are nearing the big hurdle of the classroom. The best part is, when I ask Hannah about Melissa coming back and if she is ready- she says yes. She is looking forward to it- she doesn't say it in those words, but I can see it in her face and feel it in her heart, that she is ready to go toward the fear.

It is so surreal- in some ways I feel like my 7 year old daughter is MY teacher- this wise old soul who was born to me as a gift to help me grow and expand in ways I never could have without having helped her through SM. In helping her release her fears and find her voice, she is effectively helping me release my fears and find my voice. We are going through this together. I am grateful.

Go toward the fear. Hannah, I will hold your hand all the way- if you promise to hold mine.

(1985 Pee Wee Football- Danbury,CT- looking at the picture I am 2nd from the right in the back row)

When I was 10 years old, I tried out to be a Pee Wee Football Cheerleader. For the weeks leading up the tryouts I diligently practiced cheers, jumps, splits and cartwheels behind the bleachers, where my mom sat watching my brothers baseball game. I imagined the pride I would feel putting on that coveted cheerleader uniform- yellow sweater, pleated maroon skirts, nude nylons, maroon leg warmers, and the those white and maroon saddle shoes. For added flair, I would put my hair in a side ponytail (not to be confused with pig tails or a straight pony tail). Finally, those pom-poms, one in each hand, would be mine- all mine!!

When I made the team, I literally leaped for joy. I couldn't wait to learn and absorb everything from Stephanie, our coach, who looked like your iconic 80's twenty-something- her feathered hair was reminiscent of Farah. She not only looked good but ran a tight ship in her role as coach. Looking back, it appears that the adults took 5th grade Pee Wee football and cheerleading as seriously as the kids.

In the coming months, I would learn alot about how to be a Pee Wee cheerleader. I learned how practice makes perfect, how to play to each others strengths, what cheers were appropriate based on the status of the game and ultimately how to make my voice heard amongst all the other girls. In our minds, our voices and cheers were vital to the success of our team. We were there to support, encourage, nudge the players and the fans, taunt the visiting team and remind everyone that we were steadfast, determined and we were the TROJANS and would not be defeated!

I have come to realize the role of a cheerleader is not so much different from that of an advocate. I now understand through our journey with Selective Mutism that being an advocate is a part of my job as a mom. Along the way, I have learned how to network, work with people in a variety of roles, educate and ultimately influence and advocate in Hannah's best interest.

As any parent knows, there is a very fine line between advocating and pushing too hard to the point of stepping on people's toes and/or egos. Just like I could have never anticipated that I would be older than my children's teachers, I could not have predicted just how hard it is to walk that fine line. The reality is, no one knows my child better than me, and while I will try my hardest to be respectful and appreciative, I will also not back down in my fight to get Hannah the support and services she needs to be most successful in school. My job as her advocate, her cheerleader, is to encourage not only her, but to motivate school personnel to take the time to learn more about SM, use their creativity to create goals/rewards in the classroom, and to learn the difference between enabling and having the expectation to speak.

Sometimes I long to go back to those 10 year old cheerleader days. Being an advocate is a lot less clear cut and highly under appreciated--most people don't know the behind the scenes work that is involved in educating, bringing awareness to the school and community about SM. There is so much work to be done in this regard. I dare to say that teachers have a hard time understanding the parents perspective- how hard it is to help your child (when you can't be in the classroom all day) and you are leaving it in their hands to help your silent child who is missing so much by not being able to participate in discussions and question/answer and so much more. I remain puzzled at how hard I have had to work to get school administration to get on board with the fact that Selective Mutism does indeed impact Hannah's ability to thrive in a classroom both academically and socially.

So, for all these reasons above, I will continue to advocate. I will cheer Hannah on. I will put faith that putting my voice out there will inevitably help to release Hannah's voice. I will be grateful for the fact that when I was 10 I had a voice and was able to set it free daily in the classroom and in cheerleading. I will smile when my efforts result in Hannah's voice being set free.

Inserting a presentation/overview of SM that I just sent off to school today:

http://webdoc.nyumc.org/aboutourkids/files/pages/assets/sm_homeschool_therapist_collab.pdf

Silent Night

This Sunday was the Christmas program at our church. Both Hannah and Jake were set to perform in the program and knew what was expected of them. Christmas outfits were ready to go and we were out the door to the 10:30 service.

There was a buzz and excitement in the air as families gathered to take their places-- waiting to see their little ones perform the once a year Christmas show. Pastor G had to ask for everyone to "let go of their personal space" so as to fit everyone in the pews. There was almost a collective sigh in the crowd as everyone found their seats, turned their phones off and got their cameras ready.

Jake was the first to perform, he went up with the other Kindergartners. He sang his songs, did the hand motions, and being that this was his second 'performance' this week, he appeared to go through the motions quite effortlessly. He came back to the pew without a care in the world and waited for his sister to take the stage.


Hannah walked up to the stage. She took her spot on the end of the first riser. Her body was stiff and she shifted, noticeably not at ease, with the several hundred people in the audience.....but she did take the stage! She looked so beautiful in her red sweater, silver skirt and freshly combed hair. As I looked at her, I found myself thinking of how one of the first things I noticed about Hannah as a baby was her beautifully shaped lips. As I look at her lips this morning, I notice they are clenched tight, a sure sign her anxiety has kicked in and will hold her voice hostage until the performance is over.

I catch Hannah's eye and want to wave my hands back and forth like all the other parents but I catch myself and stop-- yes, she wants to know where we are in the audience, but no, she does not want me calling attention to ourselves and certainly not to her. I go back to the day in preschool Hannah pulled me aside and said (prior to her first show there) "mommy- can you please sit in the back and please don't watch me, OK?") This goes against all instincts as a proud mother-- I want to sit up front and center, smile, wave and cheer her on. If there is one thing I have had to learn on this SM journey, is how to contain myself and hold my pride and joy within (instead of carrying it on my sleeve), so as to respect Hannah's wishes.

Hannah made it through the song list and by the last song she started joining in on the hand motions to the song! She was actually doing the motions! This was very exciting to see, as this is one of those baby steps you learn to appreciate big time as a SM parent. I look for mouth movement, but she is not there yet....nope, we are only getting hand motions today and that is OK.

Hannah leaves the riser and takes her seat again. I burst with pride in both my children......I am proud of Jake's ease at which he stands on stage, performs effortlessly and confidently. I am proud of Hannah for taking the stage and standing there amidst anxiousness that consumes her insides to the point of taking her voice from her. I am proud of her bravery and for her taking a risk in doing her hand motions today. I will tell her how proud I am of her, but not until bedtime when no one else is around because that is how she prefers it.

As I listen to the postlude song "Silent Night" I am taken in a whole new way by the words.

Silent Night, Holy Night, All is Calm, All is Bright

I close my eyes and go within. A sense of calm and peace takes over.

When I think of Hannah and I think of her "situational silence" it often breaks my heart. However, when I hear this song and these words, it brings me comfort. All is Calm, All is Bright. While this journey has not been easy and sometimes very painful, I have never wavered in this sense of knowing that she WILL be OK, and she has a bright future.

My friend, Karen, really summed it up best when we talked recently- she told me that the best thing she can do for her son (who also has SM) is to "be their cheerleader, whether they sit next to you, watch the other children sing, or stand on the risers and sing away themselves. Let them know you will always be the one that understands them and will lovingly be there to give them a push or place to rest." Beautifully said Karen!

Silent Night, Holy Night, All is Calm, All is Bright!

Human Connection

Human Connection- is there anything more powerful? I think not.

I set out this weekend to visit my grandmother,Mimi, who lives in Baltimore. She will turn 93 years old on December 17th. She was recently hospitilized, the first time she has been in a hospital since her children were born! My whole life Mimi has been the picture of health and an independent, on the go lady. She rarely sits still and prefers it that way. I knew I had to visit her so that we could share some 1:1 time together and connect. This weekend reminded me (again) of the value in just sitting together- whether there is conversation or not- and how powerful that human connection is. Mimi and I chatted, reminisced, laughed and also had a battle of wills about who was actually taking care of who while I was there. Mimi is one of a kind--How very fortunate I am to have had this time to connect.

This weekend I also had the opportunity to meet my 1st interviewee for my book on Selective Mutism. Talk about powerful human connection. We met for the first time at diner in Annapolis, Maryland. We had only talked via email prior to our meeting. Neither of us knew what to expect and I know I was a little anxious about how things would go. My first inclination was to give her a hug when we met, as I felt like we already had an unspoken bond in having SM kids and this shared experience. We proceeded to talk for over 3 hours and had I not had to leave to catch my flight, I imagine we could have stayed there all day talking. Another reason to be grateful- having had this opportunity to connect in person and hear her family's unique and inspiring journey with SM.

Finally, today I was doing my 'usual' run to Target and had another connecting moment. I was looking at some Christmas decorations and came across something that made me smile- a Star Wars Yoda tree topper- no lie, you could actually top your tree with a Yoda that lit up....what a riot! I was partially amused and partially horrified about putting something like this on top of my Christmas tree. As I stood there, having this internal struggle in my head, I let out a few chuckles. A young man, who looked to be about thirty-something, was in the same aisle and turned and looked at me. A little embarrassed that I was making a "scene", I quickly explained, "I was just laughing over this tree topper- what will they think of next - my 5 year old son would LOVE this and I was thinking about the joy on his face if I were to bring it home." I was about to look away and move on with my shopping when I noticed the expression on the man's face quickly change- his eyes suddenly filled up and he went on to tell me,"this is my first Christmas without my Mom.....and it is really hard"...and he kept repeating "it is really hard." It really touched me and I told him how sorry I was and that I could imagine that it was a difficult time for him. In that instant, our existance as total strangers diminshed by light speed, and suddenly we were two human beings having a connecting moment. The man took a deep breath and a big swallow, so as to pull himself together and said, "my name is Todd", as if he felt compelled to share his name after sharing such a personal moment with me.....I reciprocated and said my name and then there was a moment of silence and quiet understanding and Todd said goodbye. In that moment of silence all I could do is look him in the eyes and tell him how sorry I was and hoped that the small gesture was enough.

Human connection is a powerful thing. Connecting with other people is what gives us meaning to our lives. I am grateful for all my connections this week--they are not only gifts but reminders of how blessed I am and how small gestures make a difference. I hope that in the hectic season we can all be on the lookout for ways to connect with family, friends AND strangers by being truly present and aware of their needs.

Great book to get you in the spirit of Connecting and Giving:

"29 Gifts" by Cami Walker

www.29Gifts.org

The Art of Just Being There

I have been spending alot of energy this week thinking about a friend of mine, LeeAnn. LeeAnn has been battling a serious illness since this summer and is still in the midst of unknowns, treatments, and alot of "what ifs?" While she appears to look normal and for the most part, feels good, her insides are in the fight of their life, battling against cancer. I have called, visited and sent notes, but yet I can't get her out of my mind and wonder what more I could do.....I feel so helpless and so unsure of what she needs during this uncertain time.

A brief word about how LeeAnn and I met: About 4 years ago we were brought together by our daughters who became friends in preschool. Hayley was not your average preschooler- she was more like an angel- in my eyes......for she offered friendship to Hannah during some of the most difficult years (ages 3-4) of Hannah's Selective Mutism. She accepted Hannah, despite her silence, and was her friend in such a pure, unconditional way. I can still picture the two of them sitting silently next to one another, working on art projects and coloring. Hayley accepted my child, who didn't say a word out loud, laugh at her jokes, or respond to her questions. Hayley sat with Hannah and had no expectations. Hayley didn't leave her side to go off with other preschoolers who did talk. Hayley was an unconditional friend when Hannah needed one most. I will always hold a special place in my heart for Hayley. (note: picture of Hannah and Hayley was taken this year- side by side at the art table!)

After preschool, the girls remained in touch through play dates, birthday parties and swim lessons. LeeAnn was always such a good listener and so supportive through those early years of us getting to know Selective Mutism. She also shared in our excitement as Hannah began speaking with Hayley and her family. She couldn't wait to tell me how Hannah was talking her ear off at Hayley's birthday party this year-- something Hannah had never been able to do through the years (birthday parties are very tough for SM kids).

So as I sit here wondering what I can possibly do to support LeeAnn in her time of need, I think of what Hayley did for Hannah. I find it ironic that in searching for how I can best help LeeAnn, I find my answer in how her daughter treated mine.

Looking back on Hayley and Hannah's friendship has helped me see what is truly important: just being there, unconditionally. It reminded me not to get caught up in whether I am giving enough in the material sense of the word (meals, cards, flowers)- but rather am I giving Leeann my time without expectation or trepidation of doing or saying the wrong thing. I need to focus on the art of just being there, just as Hayley was for Hannah.

I believe that the universe has a timing and purpose to everything. Just as it was Hayley's time to offer a hand to Hannah and sit in silence with her, it is now my time to sit in silence with LeeAnn and just be. I may not know the right thing to say or do, but just my presence by her side may be enough.

Please keep LeeAnn in your thoughts and prayers and count your blessings for friends like Hayley.

A picture is worth a thousand words

Pictures have always played a big role in my family's life. My Grandpa was an avid photographer and had a collection of albums that were among his most prized possessions. I can still see him, clear as day, walking towards me with his camera strung around his neck, ready to capture one of our sports highlights, team pictures, shots with friends and family. We often teased him about his hobby (especially when he would send his film through the mail because it was a whole $1.50 cheaper than bringing it to the store). He didn't always get the best shots, but he did have a knack of knowing every individual's name in the pictures and keeping an organized album.

My Grandpa passed this hobby on to my Mom. You can always count on my Mom to have her camera with her and she develops the film as fast as she takes the pictures (this is where she differs from my Grandpa). Perhaps her favorite thing about taking photos is taking her pictures and turning them into personalized gifts, keepsakes or as a gesture to share memories with her friends and family. I really admire her keen sense of knowing what pictures tell the best story or represent the true character of a person.

So, it shouldn't have surprised me when my Mom recently made copies of Hannah's school pictures from her preschool photos all the way through her current second grade photo. She put the pictures side by side and commented on how the pictures really showed Hannah's story-- the progress she has made on her journey with SM. As we looked at the photos lined up together, it was almost like looking at one of those cartoon books where if you flip each page fast enough, it looks as though the character is actually moving. The variation in Hannah's pictures reminded me of this.

After my Mom left, I realized it was hard for me to look back at Hannah's earliest school photos-- they bring back a flood of memories of our early years of trying to understand and figure out what was going on with Hannah. They make me melancholy and a little sad to think of her looking back on these photos some day and wondering why she looked so sad.

For those of you who are not as familiar with Selective Mutism- children with SM often have trouble making eye contact and/or smiling for a photo (especially if they do not know the picture taker or if they are in one of the environments they are uncomfortable in). For Hannah, school was and still is the environment in which she struggles most and, therefore, any pictures taken in those early years were non-smiling ones.

As my eyes traveled to that first preschool picture, I immediately went back in time to that day-- I remember it well-- Hannah all dressed up in a cute red and white Scottie dog outfit with a white bow in her hair- the photographer posed her and had her sitting there on a chair. "Smile!" said the photographer. When Hannah didn't respond, the photographer pulled out his bag of tricks and tried endlessly to get her to respond/giggle/smile. Hannah sat stone faced, her lips frozen shut and not a hint of a smile....even her pretty blue eyes sat expressionless. The photographer turned to me and shrugged his shoulders as if to say, "are we done?" and I simply smiled and shook my head and said "I think we are." I left that photo shoot deflated and mystified at how my precious little three year old, the one who was so spunky, observant and cheerful at home and when she was with family and friends, could sit so solemnly and be so expressionless. I was sad that her very first school picture would be one in which she looked unhappy and anxious.

As hard as it is to look at some of Hannah's earliest school pictures, they are a part of her story and demonstrate how far she has come. After the major breakthrough we had this summer, I am happy to report that Hannah smiled for the first time ever in a school picture this year (her second grade picture)! I believe that this picture will be forever remembered by all of us closest to Hannah as the "breakthrough" year for her. Her smile this year reflects the hurdles she has overcome and the progress she continues to make on a daily basis. This smile lets her spirit shine through and expresses that she is finally ready to let the outside world in. I could not be prouder of her than I am when I look at this picture.

A picture is worth a thousand words.

A fresh perspective on strengths

Today I had an aha moment that brought fresh perspective- a new way of looking at things.

I was meeting with my old boss from BBY today for coffee. We had not seen one another for 8 years! We were giving updates on what we have been doing since we had last worked and seen one another. We dished on old colleagues, personal and professional successes & challenges and spent a few minutes sharing some of our 'passions' (I am expecting my friend to buy an easel by the next time I see her!)

In reflecting on our time together in the corporate world, I shared that I always felt a little out of place in that setting because my strengths leaned toward soft skills. I have always been a 'people person' and commended on skills like empathy, positivity, harmony, good communicator, and a relationship builder. However, it wasn't long in the corporate world before I figured out that these skills don't always get the same attention or are not as valued as the gal/guy in the cube next to me who was a hard hitting, unemotional and results driven person. I do not intend to offend any corporate people out there--and surely there are people with soft skills that do very well and are highly regarded in the corporate world.....however, FOR ME, hindsight has taught me that I am better suited for a smaller organization and one that is in absolute alignment with my values.

Today the realization hit me that had it not been for these soft skill gifts that God gave me, I might not have been as well equipped to help Hannah with her Selective Mutism. The very skills that come naturally to me are what have carried me through this journey.

I remember this one conversation I had with my "strengths coach" while at a training years ago-- she said that empathy might not be what brings me great success in my current job BUT it will serve me very well on a personal level and especially as a mom (I was pregnant at the time with Hannah)- what this coach gave me was a new way of looking at the situation- a fresh perspective.

So, I got to thinking........ what would a job description look like for an SM mom?

Something like this-

This job is full time with no pay and lots of overtime. You will be compensated and rewarded in the way of progress made by your child. This progress will not happen overnight, yet in baby steps, and only you will understand just how BIG those baby steps are. You must be observant and notice each gain and praise- and be sure to include your child in deciding how they like to get praised. You must be able to rally your whole family to support this child unconditionally and keep them in the loop on setbacks and successes.

Must be able to deal with ambiguity. No two days will be alike in this job- patience, empathy and compassion are a must. This person must have good organizational skills and attention to detail- this job entails coordination efforts between parents (to educate on SM and schedule playdates), school, (for meetings about IEP's and 504's)the community (educating coaches, Sunday School teachers, waitresses, etc), thus making strong written and interpersonal skills a must.

This person must be passionate about advocacy and with that, have the ability to influence others. May be called on to present information to the school and/or SM support groups. Must be strong in their convictions and able to withstand push back from school. Will be expected to advise school personnel and consult with therapists for best treatment approach. Must be proficient in Microsoft word and Internet savvy as to best document progress and research current SM data. Also must be creative in developing goals and rewards that motivate SM child to make progress.

I have a grateful heart that my mark in the world so far is tackling this issue of Selective Mutism. I will not take credit for getting Hannah through this-- as SHE is doing the hard work-- and we have been blessed in having supportive family, friends and now expert therapists. However, I am grateful that some of the things that come naturally to me are the very things that have helped us on this journey.

I may not have climbed the corporate ladder, but I have climbed alongside Hannah and am confident we will reach the top together. In the end there will be no greater accolade, recognition or reward than seeing her spread her wings and fly, her spirit and voice as one.

What about you? How have you used some of your strengths to help you on your journey with SM or other challenges thrown at you in life?

For more about StrengthFinder I referred to above: http://gmj.gallup.com/content/102310/clifton-strengthfinder-book-center.aspx

"To the world you may be one person, but to one person you may be the world"(author unknown). One of my favorite quotes.