Lately I find myself in a bit of holi-daze thinking about all of the magical chaos that is Christmas time in the land of little kiddos. Our “to do” list seems to grow exponentially each year. Unfortunately, I cannot say the same thing about my energy supply.

December is a marathon and not a sprint. There are lights to hang, trees to decorate, holiday cards to order, stockings to stuff, shopping to do, holiday concerts to attend, Santas to visit, cookies to frost, presents to wrap, stockings to stuff, and not to mention a mischievous little red elf to be moved each night.

And, as I stop to recount all of the holiday chaos in my own life, I am reminded that I live with a little person with Autism Spectrum Disorder. And as overwhelming and chaotic as the holidays seem to me, I cannot begin to imagine what all of this must look and feel like to someone with a sensory processing disorder.

I am a fully-functioning adult with typical sensory reactions. And most days it is all I can do to keep my cool amongst never-ending crowds. I find myself distracted by the merriment of music and flashing colors all around me. I fight the urge to retreat from the chaos of each store that I enter.

The colors are brighter, the music is louder, and the crowds are bigger. There are people in costumes ringing bells. Stores are flooded with huge crowds of people with varying degrees of manners and patience. Everything around us comes to life during the holidays. It is equal part exhilarating and overwhelming.

Christmas is a lot for me. I think Christmas is probably a lot for most people. And, if Christmas is a lot for me, I can only imagine what Christmas feels like for my 4 year old son.

So, how do we manage Christmas and autism? The answer is quite simple, we do it carefully and with intention. We make conscious decisions each day to consider our son’s diagnosis. Celebrating an autism-friend Christmas does not mean removing all of the magic and joy, it just means turning it down a little bit.

We prepare. We talk to him and use social stories and movies to describe Christmas. We let him be involved in decorating. He watches us move the furniture and put up the Christmas tree. I put my beautiful glass ornaments on a shelf in storage and instead hang “shatterproof” ornaments that work in the reality of our home.  And some days our shatterproof ornaments are touched and tossed and rolled and dropped and kicked. And that is ok. We brought Christmas into our house in a way that works for all of the people who live there.

We accommodate: Our schedules are turned upside down a little during the holidays. At school they loosen the structure of the day to make time for holiday concert practices and festive arts and crafts. At home we are scheduled for more dinners and outings and family activities than usual. The business of it all is overwhelming. When we schedule for our family we ask ourselves one simple question “Is the best thing for us?” And, sometimes the answer is no. Sometimes even when the activity sounds fun we have to say no. Sometimes even when we have previously said yes we need to change our answer and say no. Not because we are a bunch of Christmas scrooges, but because there will always be another holiday party or festive show or family get together. We live our life one moment at a time. And, in each moment we make decisions that are the best for us.

And when we say yes we do more preparing. We bring our emergency bag of tricks. We control the volume and lights and crowds as much as we can. We deliberately arrive early when the crowds are small to give him time to adjust. And most importantly, we recognize the early cues to pack it up and head out.

We celebrate: The holidays would be easier from the comfort of my couch watching holiday movies in front of the fire place with hot chocolate. But there is just too much magic out in the world waiting for us. So we prepare and accommodate for a Christmas in the real world so that we can celebrate with our children. We are not willing to minimize our Christmas experience just because it would be easier.

And, we are hopeful that with each passing day the world outside of our home will become more sensory friendly. We are encouraged by all of the stores and holiday performances that held autism-friendly campaigns over the holidays. The greatest gift of all this holiday season is the notion that this wonderful magical world we live in is becoming a safer, more welcoming place for my son.

In the end, it is all about balance.

It is carving out precious moments to savor the magic of Christmas with our children. It is awareness of the needs of our children. It believing in things even if we cannot see them. It is being thankful for the joy in simple things.  It is teaching our children about forgiveness. It is worrying about presence first, and presents second.

Balance. Magic. Awareness. Belief. Forgiveness. Presence.

Because after all, that is what Christmas is all about.

Merry Sensory-Friendly-Christmas From our family to yours!

Jessica

I have come to learn that my parenting strategy is 60% intuition, 30% faith, and 10% dumb luck. Although, sometimes it feels a bit more like 100% faith. Faith in myself, faith in my children, faith in my support network. Faith in anything I can find to throw my faith into. And, other times this parenting gig feels a little more like 90% dumb luck and 10% red wine. (Well, maybe 80/20. Or, 70/30).

Early in parenthood I worried about getting it right all of the time. Finding the perfect balance for myself and for my family. Perfectly maneuvering each challenge along my parenting journey.  And then something really crazy happened; I kept getting it wrong. Despite all of my efforts to do the exact right thing, to be the exact right mother, I was still getting it wrong from time to time.

For a long time I let myself believe that this was a parenting flaw. I told myself that perhaps I was not enough. I needed to look deep inside to be more. To do more. To be a version of myself that always got it right. I just could not understand how all of the pieces of my life did not form the perfect puzzle I always imagined they would.

And, after feeling like that for a while I decided to give myself an amazing gift. I let myself surrender to the idea of the mother I thought I “needed” to be and I started to become the mother I actually was. I stopped worrying about getting it right all of the time and I started giving myself permission to make mistakes. I accepted that perfection was a moving target.  And, one that I was likely not going to reach.

I began to see the pieces of my life in a very different way. Maybe not the perfect puzzle that I always envisioned, but somehow in all of the perfect imprecation, all of the pieces still fit.

Some days my intuition fails me.  And, at times my faith has limits. I know that dumb luck as a parenting strategy is far from fool proof. And since none of my parenting strategies are perfect and without flaw; I give myself permission to do the best I can. To celebrate when I get it right. To recover when I get it wrong.  To be something less than perfect. To live a life that is great, even when it is messy.

There are a hundred moments a day that test my strength as a mother. I get it wrong way more than I get it right. I replay conversations from the day and I think about all of the ways I can improve them next time. I give myself permission to get it wrong, and I hold myself accountable to do better next time.

Because parenting is an evolution. It is being the best version of yourself in any given moment… considering any number of obstacles…amongst any number of limitations and hardships.

Parenting is trusting intuition. Parenting is having faith. Parenting is letting dumb luck knock it out of the park from time to time. And sometimes, it is pouring a big glass of red wine and saying “better luck next time.”

JS

Today I came across a photograph from our Christmas card in 2014. I sat for a moment and looked at the picture. I looked at my adorable baby Rowan, only 9 months old at the time. I looked at my little man Grayson, so full of life and love. Pre-diagnosis. Pre-labels. Pre-answers. Pre-interventions. Pre-all of the things that have rocked our world since that photo was taken.

I look at us sitting there on the front step of our new home. I see all of the hope and love on our faces. Our life was about to take off in ways that we had never imagined. Our journey as a family was about to grow wings.

Yes, we were a family in that photo. And yes, we were a family when we moved into that house. We were a family the moment my husband and I said “I Do.” And again each time we welcomed one of our beautiful little boys into this world.  But, in the time that has passed since that photo was taken, I realize now that we have become a family in a different way. A bigger way.

Our world is different now.  Different in ways I still do not fully understand. Not better or worse. Just different. Our life is different than I imagined it would be. And sometimes I feel guilty for feeling that way. Sometimes the word “different” feels like a place holder for words like “messier” or “challenging” or “filled with heartbreak”. Because the truth is that sometimes this life is messier than I imagined it would be. Sometimes our life is more challenging than I hoped. Often life is filled with heartbreak that I did not expect.

But this life, my different and unexpected life, is also filled with more joy and love and passion than I ever imagined. And if living a “different” life means living a life filled with happiness; then I am ok being different.

As I look at the woman from two years ago I am able to see her for who she was. She was a woman on the verge of the fight of her life. Her face is smiling in the picture. But, inside of her head she is overcome with questions and fears. She is questioning whether or not she is enough for the journey that lies ahead. She is fearful that she may not be the mother she needs to be. In this picture her oldest son is two years old. And, those first two years were very different than she imagined. She is unsure if she is up for it. She is not really even sure what “it” is. She is scared. She is filled with doubt.

You see, three months after this picture was taken that two year old was diagnosed with Autism Spectrum Disorder. At the time this photograph was taken that woman knew this was a possibility, but she never dreamed it would be her reality. The woman in the picture is slowly and methodically repeating one purposeful mantra in her head over and over. The woman is saying “this is a phase, and he will grow out of it.” That is what the woman told herself every day. That is what she needed to believe. That is how she put that smile on her face.

Somewhere along the way I became a woman and a mother very different from the woman in the picture. That mother was not strong enough for this journey. That woman was not brave enough to face all of the obstacles ahead. And slowly, day by day, that woman and mother became someone stronger. A mother capable of picking up the pieces and starting new each day. A woman steadfast in her pursuit to move forward. Today, I am that woman. I am that mother.

As our journey changed, I changed. Not because I wanted to. Not because I knew how. Not because someone forced me. I changed because my son needed me to change. My family needed me to change. And, I needed me to change.

Today I am no longer on the verge of the fight of my life, I am right in the middle of it. Each day we go up against things that scare the crap out of us. Every night we sit in our home and talk through all of the strategies and the interventions and the plans for the future. We put in the work every single day to keep driving our family forward.

After looking at the picture for a while I looked to a very similar picture from this year’s Christmas card. I see the mother I am today smiling in the picture. And, I know that the smile is different. This smile is not masking fear. This smile is not covering doubt. This smile is genuine.  This smile is real.

Today we have answers to so many of our questions. And sure, each answered questions opens up a million new questions. But we are moving, and along this journey any movement feels like progress. I may not be certain of every step I take, but I have certainty in the path. I have certainty in the journey. I may not be able to prepare for every obstacle that lies ahead of us, but I know that I am strong enough to navigate them as they come. I may not get it right every single day, but with each passing day I am becoming a person strong enough to keep going until I do get it right.

I needed to see that photograph this morning. I needed to remember who I was. I needed to understand who I have become. The price has been high. We have sacrificed relationships and time and energy and sleep. We have given a lot of things to this journey. But this journey is giving a lot to us. Each day I get a little bit more of my son. Each day he is a little bit more involved and active in our family. Each day we grow closer as a family through our love and our strength.

We will surely stumble. We will most likely take a few falls. We may want to give up.  But, we will not.

I wish I could have told that mother in the photograph that she was going to be ok. That she was going to be enough. That she was going to survive. She may not have believed it at the time, but she sure believes it today.

JS