Huge Small Victories

IMG_5358This weekend we went away for Grayson’s 13th birthday.  I definitely wasn’t in a celebratory mindset going into the weekend, as we had gone through multiple mind changes and so much deliberating about where to go, who should be included, where we would eat at, what we would eat, what the hotel would be like, etc…etc…etc…

The small farm-to-table restaurant was delicious, but did not have “normal food.” There were multiple breaks where Grayson left the restaurant to calm down, and several episodes of concealed (but silent) tears beneath his tightly drawn hoodie while hiding his head underneath the table. Although he tried bites of everything I asked him to, his dinner basically ended up being the “normal” gluten, dairy, egg-free cake that I made for him and brought from home.

The next morning at breakfast, he walked up to our server to ask for his drink by himself and she patted him on the shoulder as he turned to walk away. It was this small, but monumental event that changed my dutiful weekend into a celebratory one, filled with gratitude, amazement and a quiet but firmly substantial joy. 

Any parent that has a kiddo with sensory issues, knows that a touch from a stranger has the potential to turn into a full blown meltdown. But on October 27, 2018, Grayson’s 13th birthday, he didn’t flinch. He didn’t even seem to notice that a stranger had touched his shoulder. 

I was reminded of being in a similar hotel in Missouri approximately 11 years ago. Grayson was sick and on prednisone and a complete mess. He was red-faced, screaming, and asking for juice in the hotel restaurant. He then proceeded to hurl the full cup of juice all over the floor once he received it. This was the same weekend that he bit his new baby sister’s toes and made her bleed for no apparent reason at all.

I also remembered the first time I tried to take him swimming with his siblings at the community rec center. After his screaming and crying calmed down, he proceeded to sit on my lap and repetitively buckle and unbuckle this life jacket for the duration of our time there. 

But on his 13th birthday, we went to a hotel and a new restaurant, and a monstrous skatepark with huge ramps. He didn’t have a melt down.  He asked for help from strangers when he needed it.  He navigated his way through the skatepark while we sat and watched and he tried new things and worked through his fears with the skills and coping mechanisms that have been taught to him by angel-teachers through the years. 

On the morning of his birthday, he wrote me this note, using the voice-to-text skill that was again given to him by teachers as a gentle accommodation when writing by hand was hard for him…IMG_5346

For any parents struggling through a brutal introduction to life with a special needs kiddo…it can get better. The progress is slow and often imperceptible, but the payoffs are immeasurable. I have learned more from him than he could ever learn from me, and although I have questioned over and over if I am the right mom for him, I know beyond a shadow of a doubt that he is the right child for me.

“Love…bears all things, believes all things, hopes all things, endures all things.                     Love never fails.”                                                                                                                                    I Cor. 13:7

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The Many Faces of Autism

I have wanted to publish a book for a long time… not a book with words or even illustrations.  Just a book of photographs.  I would call it, “The Many Faces of Autism.”  In this book, I would chronicle what autism in our house looks like on a day to day basis – the good, the bad and the ugly.

Most likely, I will never get around to a book of any sort.  But as it is Autism Awareness month, I’ve felt the need to do something to honor Autism, honor Grayson, and honor our journey that we’ve been on together.  I have put together a mini sampling of photographs (click on photos for descriptions).  Maybe this is something that only a mother can appreciate.  I really don’t know.

What I do know, is that sorting through these pictures has resurfaced so many emotions – sheer joy and pride, and grieving all over again at the hard reminders.  I remember the early fits and craziness, countless doctor appointments, and the constant helplessness that never left my side.  I remember peeking through the preschool window to see him pulling his hair and rocking, all of his frantic fears…plastic bags and umbrellas in the wind, the fear that someone would eat his food, touch his bellybutton, etc…etc…etc…  I remember crying the day that he ate his last Krispy Creme doughnut, knowing that a super restrictive diet was to start the next day, as we tried to heal his bleeding ulcers and bacterial gut infection.  This “diet” would kept me up until 3 a.m. trying to figure out what in the world to feed him and learning 1,000,000 new terms for allergens.  I remember never being more than 5 minutes from his school and the way my heart would race every time my phone rang.  I remember the screaming, sometimes hours on end, and feeling like death would be a welcome relief.

However, in spite of all of the heartache, what I mainly see when I take a bird’s eye view of these photographs is…GROWTH!  In the midst of the day to day fits and agitations and 50 TRILLION QUESTIONS, I can easily forget just how far he has come from the little boy that he once was.  These pictures serve as a sharp probe to remind me to count my blessings.  Sadly, I have gotten lost in my own agitation and impatience.  I have started seeing failures instead of successes, and I have forgotten how to laugh with Grayson and find compassion for him in his struggles.  I have forgotten that he is funny and sweet and smart and creative!  And in all of this forgetting, I have forgotten that although I may be tired, I am not a mean and angry, old and haggard witch (how I feel at the end of so many days).  I have forgotten that it’s ok to laugh and smile.  I have forgotten so, so much.  I have a lot of remembering to do, and quite honestly, this overwhelms me.  What if I cannot remember how to get back from where I came?  Perhaps I have never even been “there” and need to forge a new path??  But then I think of Grayson and all that he has overcome and become, what we have become together.  And I know that I can, and that I will, get where I need to go.

 Maybe this is the beauty of photographs.  They capture moments that trigger memories.  And though not immediately apparent, when viewed from afar, we are able to see that which was missed standing close up.  So, without further ado, I am happy to share, “The Many Faces of Autism…”

(Grouped into the following categories…Obsessions, Firsts, Sad Times,  Progressive Photograph-ability, Sleeping Anywhere, Crazy Moments, Precious Moments and my Favorite Notes from Grayson)

“Ugly” Beauty

When my daughter was young we visited a women’s monastery.  There was a young nun tending to the chickens.  By all cultural standards, she was not pretty.  Her face was broken out and scarred, she had thick glasses and braces.  Her dark eyebrows formed a solid line, giving the appearance of a heavy, furrowed brow.  However, she warmly invited my daughter to help feed the chickens.  They chatted and laughed like old friends and when they were finished, my daughter casually remarked to me, “I hope I can be as pretty as she is some day.”  Her statement stopped me dead in my tracks and pointed out my embarrassing and blaring inability to see true beauty.

I’ve been thinking a lot about beauty lately: not the Victoria’s Secret/Hollywood kind of beauty, or even the glowing sun setting over the mountains kind of beauty.  I’ve been mulling over the idea of true beauty…soul beauty.  This kind of beauty might outwardly appear revolting or undesirable at the very least.  But for those that have the eyes to see, it is the purest form of beauty, ignorant of age, race, gender or religion.

I have a lifelong friend who is a cancer survivor.  After she lost her hair and struggled and fought her way through chemo and radiation, her hair began to grow back.  Naturally, she was self-conscious, but as she was bathing one night, her little girl petted her head and offhandedly commented how much she loved her mom’s cute, tiny baby hairs.  Those little stubbles of hair growing out of a bald head were beautiful.  My dear friend in a weakened state of vulnerability was beautiful.  It just took someone with the eyes to see.

I have another friend who while walking toward an elevator got stuck behind a slow moving mother and her child with special needs.  The child walked abnormally, shuffle-shuffle-clap, shuffle-shuffle-clap.  The mother was trying to move her child along to allow people through and apologetically glanced back at my friend.  Before the mother had time to offer an apology, my friend enthusiastically exclaimed, “Look at your beautiful child! He’s clapping to the rhythm of his steps perfectly!”  The shocked mother admitted that this was indeed what he was doing.  A child finding his own rhythm was beautiful.  A mother trying to be sensitive not only to her child, but to those around her was beautiful.  It just took someone with the eyes to see.

In each of these cases, our well-intentioned society might try to “fix” that which is “ugly”…make-up and a wax job for the sweet nun, a wig for my friend with cancer, therapy for the child walking irregularly…thus allegedly beautifying each scenario.  But in doing so, we dictate what we think beauty SHOULD look like and lose sight of what true beauty actually is.  True beauty functions like a magnet.  Those who are unable to perceive it will be repelled and perhaps even repulsed.  But for those that have eyes to see, true beauty will attract, draw in, and connect people on a soul level.

I realize that I severely lack the eyes to see.  I feel sorrowful when I recognize how much of my own soul is uncultivated, wild, ugly even.  But in order to avoid hypocrisy, I must practice seeing the beauty in my own soul.  I must nourish what is good within me instead of dwelling on that which is lacking.  And like a novice photographer sharpening his eye for what will make a good photograph, perhaps my vision will become clearer, less muddled by the confines of society, more free to see what is true and pure, more grounded in that which is real.  May we all have the clarity of soul to see the true beauty that is found in the “ugly”.

 

Christmas Humility Comes Early

An “amusing” half-day in the life of a mom and a kid with Christmas anxiety

 

imagesWednesday December 21, 2016                                                                                                              

3:00 p.m.     Grayson gets in the car with an amazing bag of Christmas goodies from his teacher.

3:01 p.m.     He immediately gives everything away to his sister because “it’s stupid.”

3:02 p.m.     …and quickly takes half of it back because “it’s actually pretty cool.”

5:30-5:45 p.m.  A flurry of questions concerning what time we will have to leave to get to church, how long church will last, how long the drive will last to get to Christmas dinner destination, will we eat or open presents first, if we will open presents all at once or one at a time, if he can open Christmas presents alone in a room instead of with everyone, how we will get all the Christmas presents back to our house, etc…etc…etc…etc…etc…

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The Loathsome Hover Ball

8:30 p.m.       Grayson is allowed to open one early present after asking a mere 50 kajillion times.  He looks at the half-spherical soccer ball that lights up and gives the appearance of floating  (that I THOUGHT he would enjoy), somehow manages to clench his entire face almost completely shut, throws the ball on the ground 3 times all while jumping up and down and raging about how stupid it is and crying hysterically.  I’m simultaneously trying to hush the muffled laughter of four other children so things don’t entirely explode.

8:31 – 9:00  p.m.     A series of going down to his room to cool off and coming back several times eventually ends in him agreeing to practice the CORRECT way of graciously opening a present that you don’t like and keeping unkind thoughts “in your brain,” to which he adds upon the conclusion of our practice session, that next time, he will wait until he’s calm to tell them that they didn’t pick out a good present.  Sigh… I give him an “A” for effort (as I’m trying to keep the simultaneous exasperation and laughter “in my brain”).

9:02 p.m.          …aaaannnddd he  is fighting with his sister over who gets to play with the AWESOME soccer ball and trying to think of a good place to hide it where no one will be able to find it while he sleeps.

9:15 p.m.         Grayson decides to move all of his presents down to his room so that he can open them alone in the dark in peace and quiet.

9:16 p.m.         He decides that upstairs is actually better and returns them all to their spot under the tree.

9:45 p.m.        He is sleeping!!!  Husband and I giggle and plan next year’s holiday game – everyone has to act like Grayson when they open their worst present.  Grayson opening “bad” presents is rapidly becoming an annual tradition that we have learned to find a certain amount of humor and endearment in.

9:50 p.m.        Mom labels presents from #1-7, worst to best, so that he will know what to expect and wraps a jar of pickles to practice on in the morning.

Thursday

5:33 a.m.          I am awakened to thunderous footsteps tearing through the house and a breathless child excitedly telling me that he opened another present but don’t worry it was an electric toothbrush that clearly wasn’t for him because it was dumb (it was for him).  I tell him I don’t care if he opens all of his presents.  I want to sleep.  Leave me alone.

5:34 a.m.       He is back to tell me that he won’t open anymore presents and maybe I should hide them…just in case.  I tell him in the most patient words I can muster to get out and never come back.

5:35 a.m.       He’s back again.  He wants to know what he should do with the toothbrush.  I’m getting up as I can see that this sleeping thing is clearly not going to work for me.

5:36 a.m.       I’m stumbling (literally) to get coffee and explain my disappointment… “I like to watch you open presents…Daddy isn’t even here…I’m going to have to keep all your presents in my room so you don’t do this again.”  Grayson looks at me with his eyes filling up with tears, his chin starting to quiver and explains to me in a cracking voice, “I just wanted to practice so I could do a better job at opening my presents.”

5:37 a.m.        All of my irritability and sleepiness drain through a single tear trailing down my cheek.  I shut my mouth and stop explaining and start listening.  As hard as it is for me, it’s harder for him.  I hug him and tell him, “Good job.  I’m proud of you.”   Thank God for my early Christmas gift  – a dose of humility and a reminder to slow down and sit with him in his world.

You Are Enough.

13323703_1046851035408719_7118944347292993062_oTo my new friend…and for anyone else who is struggling to feel that they are “enough…”

I can see you have a hard time recognizing the beautiful person you are and all of the wonderful things that you do.  I shared that until you are able to see for yourself how amazing you are, you would have to learn to trust those who best know you.  I realize that I just met you and don’t yet qualify for that role.  But I have been where you are and my heart hurts because I understand how you feel.

You approached me because of our shared struggle in raising special needs kids.  My impression of you right off was that you live with gratitude (you didn’t have to come up to me to say thank you), and you are courageous (for being vulnerable with someone you just met).  I quickly realized that you are exceptionally amazing because you willingly chose to bring two struggling children (that are not yours by birth) into your practically empty-nest home.  I don’t know if you recognize the magnitude of this choice.  It doesn’t matter if you have been scared or have second guessed yourself…you willingly exchanged your life for theirs and there is no greater love than this.

And forgive me, but I Facebook stalked you tonight.  I looked at your pictures and I didn’t see irritability or failure or anything else that you mentioned.  What I did see was a strong woman fighting to give two children a normal life; children that would have otherwise been lost to the proverbial system.  I saw two children living in a house surrounded with beautifully tended flowers and attending church in a loving community.  I saw birthday parties, extravagant school projects, Halloween costumes…all things that these children would never know without you.  I saw your beautiful smile in many pictures.  How many forgotten children never receive a genuine smile?  Do you realize what normalcy, consistency and safety you are giving to these kids?

Of course I know that there is more to meet the eye than what is portrayed on social media.  I know that you rage and cry and scream and want to drive off in your car and never look back.  But I also know WHY you feel this way.  It is NOT because of who YOU are.  It is because of the situation you are in and the ways you are being stretched and pushed beyond your capacity.  You are strong day in and day out.  You can’t even truly rest while you sleep because of the dreams and nightmares.  You are trying to love two children as your own, even though you missed out on the essential bonding years of infancy.  Not only that, but you work full time!!  In my book, this certainly qualifies you for some kind of major award! 

I can see that you truly want the best for these kids.  You really love them.  But I can also see that you’re tired, you’re depleted and you’re running on fumes.  You are human and you have a limited amount of time and energy.  So you have to, for everyone’s sake, eliminate all the needless junk in your life.  By this, I mean get rid of the self-imposed guilt.  Expel the hovering, vicious thoughts telling you that you’re failing.  And especially, eliminate (as you are able) all of the self-doubt that pushes you to believe that you’re not good enough, patient enough, loving enough, whatever enough.  You are you and that is enough.  At the end of every day you are empty.  This is because you have given everything so that they might want for nothing .  It will never feel like enough because they are bottomless pits at this point (regarding their neediness).  But with time, maybe their special needs will be less because of the backbreaking work you are putting forth now. 

Above all, try to look at yourself and everything around you with soft eyes.  Pursue beauty and that which feeds your soul.  Your face lit up when you talked about books…maybe you could make yourself a cozy reading niche?  Perhaps gardening or photography are undiscovered talents?  Regardless, figure out how to love, cherish, and respect yourself.  It is not selfish…it is survival.  Celebrate the small things, turn your morning coffee into a  sacred ritual.  Give yourself permission to sit and do nothing without judgment.  Fight for joy and pray for the eyes to see light and beauty. 

quotes_creator_20161219_090518And though I don’t know you well, know that I love you.  We are connected through our struggles and sufferings and I understand.  I understand that you sometimes feel trapped in your own life.  I recognize that you constantly feel as if you are on the verge of a mental breakdown and I am all too acutely aware of the guilt that has become your constant unwanted companion.  But I also see that you are strong enough.  You will have to work hard at resting, strive to surround yourself with love, and be a continual advocate for yourself and your family.  But I know that you can do it.  Hang in there and believe me when I say that you are amazing.  Good strength!

Autism, Judgment, and Love

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“Levitating” with a shovel implanted in the ground

I am the mother of an 11-year-old boy with a diagnosis of autism and a love for magic, levitating, yo-yo’s and recreating things he’s seen on YouTube.  He makes me laugh and cry harder than any of my other children.  Over the years I have grown pretty thick skin.  I rarely notice the stares if he loses it in public.  I am mostly used to the judgment.  I have been told by a stranger at Costco that I should have left him at home when he pushed his sister.  He has been nudged by the boot of an unknown man and told to “mind his mother” when he was pitching a fit on the floor.  When I locked him out of my car in the parking lot of a mall because he was hitting me, the woman in the car facing mine took off her sunglasses to glare and shake her head at me (I wanted to crawl into a hole and disappear).  To be certain, I am not impervious to these occurrences, but they have become a part of life to some degree; my new normal if you will.

But what I cannot handle, what absolutely dissolves my resolve and shakes me to the core is when someone shows me kindness.  Heaven help us all if a stranger stops and asks if I’m alright or if I need help, or even worse, tells me I’m doing a wonderful job as a mother.  I might actually drop and shed every last tear in my body.  I can be strong and keep a stiff upper lip.  But look at me with concern on a bad day and ask how I’m doing, and you might literally witness my complete and utter undoing.

There are many things in life that I do not know.  But the one thing I do know is this: impulsive judgment without understanding gives rise to anger and bitterness.  It builds walls and leads to retreat or retaliation.  Love however, can undo and rebuild in one swift movement.  It can pluck you out of your small world and drop you into the foreign land of another’s struggles.  In a world confused by what color lives matter,  who can use what restroom, and which politician will cause the end of the world, if we do not respond with love, we will leave only emotional casualties behind.

Consequently, when we find ourselves on the receiving end of unfair judgment, we are left with a choice. We can wallow in the pain, playing the part of a victim.  Or we can choose to release ourselves, and with gratitude, turn our focus to the goodness surrounding us.  We will see what we choose to see.  Even though I have, at times, been enraged by people’s cruelty, it cannot compare with the love that has humbled me over and over again.  I have seen my son bite his teacher and draw blood, and then watched them walk hand and hand into school.  Friends and family have searched for and then cooked meals that are free of the fifty billion allergens we avoid, just to give me a night off of cooking, or to make sure that my son has a special treat at family dinners.  Teachers at his school have given up their personal time so that my husband and I could get away for our anniversary.  I have received phone calls from school because one of my other children had unbeknownst to me, taken the needs of a physically disabled student upon himself, and was carrying the child’s backpack to class every day.  My dad regularly drives an hour each way to take my son to a movie so that I might enjoy a quiet morning in church alone. Finally and perhaps most importantly, I have been on the receiving end of the unconditional love of my son.  No matter how many times I lose it, or become irritable with him, or feel like I’m going insane, he tells me every night at bedtime without fail, “Good night, I love you.  You’re special to me.  I think about you in my heart.  I think about you in my peace.”  I don’t really even know what it means, but it’s beautiful.  Some nights, I brush over it, because I’m just so excited for him to go to bed.  But when I stop and think about it, I can’t really think of anything nicer that anyone has ever said to me.  And once again, I am undone.  Love has overcome the anger and frustration of the day and released me one more time from the snare of judgment (me toward myself this time).  I settle in for the night and fall asleep with the words of Mother Teresa in my heart, “Not all of us can do great things.  But we can do small things with great love.”