Understood

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For the longest time, and still now, I have the same disturbing thought. When I see someone with a brand new baby, and I can see the love that is expressed beyond words, the care, devotion and the worry that only a parent knows, I want them to feel what it feels like to have their child diagnosed.

I want them to understand that there is a very clear before and after a diagnosis, because you are never, ever the same.

I want them to feel the coldness that is a waiting room in a doctors office on diagnosis day. The vacant looks from the front office staff as they check in their child on a day that they will never forget.

I want them to look at their precious, perfect child and I want them to feel the weight and the heaviness that exists in the space where they have to say goodbye to the future they imagined.

I want them to be faced with the waves of grief as they crash over and over, often in the most unexpected places, and for the most unsuspecting reasons.

I want them to feel the painful sting of watching other children play functionally around theirs, knowing that they are reaching their milestones and their child is years behind.

I want them to understand the anger that comes with being in this helpless space as they acquire diagnosis after diagnosis. Because it’s not just one. And with each diagnosis, comes a specialist, and a litany of appointments and a number of expenses.

I want them to know what it’s like to lay next to their child as they cry, in a ball with their eyes squeezed shut, unable to communicate what they are feeling.

I want them to know what it’s like to have mountains of paperwork and dozens of meetings, and hours of worry, just to be able to advocate for a level playing field at school, which in the end never ends up being all that level.

I want them to know the depth of anxiety when they realize that their child’s personal safety relies squarely on their shoulders and vigilance, most likely for the remainder of their life. There are no breaks. No moments to let out the collective breath they sucked in when they walked into that doctors office and were handed a diagnosis.

And for the longest time I wrestled with why I felt these seemingly sadistic feelings, and then this morning, I realized it’s because I see things completely differently now, and wish others understood just how I do.

I want others who are not chosen for this path to recognize the depths to which parents like us are impacted. Our son was diagnosed almost five years ago and our wounds are very much a part of the fabric of who we are.

I want others to understand the daily weight of the uncertainty. None of us are guaranteed a long life but when we were told there was no prognosis because our child’s mutation is rare, and there are children who have died with the same condition, we are painfully aware of this lack of guarantee.

I want people to understand that we are different people and forever changed, in good ways and bad. We’ve slowly been molded, shaped and changed into these new creations that allow us to be resilient and yet fragile. Though we bounce back, it still hurts each time we get a new diagnosis, each new progress report and each moment when grief taps us on the shoulder and reminds us of just where we’re at and where we’re not.

I also want others to understand that this special life of ours isn’t devoid of joy at all, in fact, it’s rich with faith, love and community, and it’s fueled me as a person giving me new purpose, vigor and determination.

I share the hard parts not to isolate out the good but to expose the painful side in order for others to get a sense of what we experience, because that is when empathy replaces sympathy and our love for one another can grow.

So when I look at you gazing at your baby, I don’t wish you or your child ill. I want you and everyone else to know that there are many of us deeply impacted by our child’s diagnosis who now see our world through a completely different lens. And maybe, just maybe, if you understood how we are forever changed, this special world of ours wouldn’t feel so foreign.

We Pretend

I did what a lot of people did this week. I shared our highlight reel on Facebook. The smiling photos of each of my children enjoying Christmas but in reality we are happy to be moving on and away from a holiday whose traditions punctuate the masterful act of pretending that we find ourselves performing time and time again.

I was standing in the dining room on Christmas Eve folding a load of laundry while everyone in the house was occupied in other rooms. Enjoying the quiet I happily folded pants and socks until I realized that Mark was on the same floor with me and it was eerily quiet. I walked into the living room to find him crouched between the chair and the fireplace staring off into space. I knelt down next to him and just stared at him for awhile. I waved my hand in front of his face and he looked at me for a second, and then went back to staring. I talked to him, tickled him and tried to get him to turn back into my happy, giggly boy, and instead he continued to look away while he slowly picked at his foot. I thought for a moment about how if I caught Jillian sitting in the room without a TV show on, just staring blankly, how concerned I would be. But for Mark, this is normal. And this adds to the pretending. We act as if this is what is expected of a five year old, and deep down we know it’s not. With the weight of that thought I began to cry. I cried because I couldn’t keep it together; the act of ignoring the obvious became just too heavy. So I scooped him up in my arms and whispered in his ear, “one day, when we’re in heaven together, will you look into my eyes, and will you give me a big hug?” No response. I then asked him if he wanted to watch Daniel Tiger, and his eye brows lifted slightly so I put on the same DVD that we have been playing repeatedly and he got up and began sifting through a pile of alphabet letters.

Later that evening he had a meltdown. And as usual we really don’t know what set him off. We make guesses but whatever we come up with doesn’t usually give us much insight into how to help him through it. So I did the only thing I could think of, I played Lumineers and turned on the slideshow feature of my photos folder on my laptop, and displayed family photos for him to watch as he listened to Ophelia. He curled up in a chair and slowly the tears dried up and the calm came. But in the process I know that it made the evening hard because my whole family had to collectively pretend that what was happening wasn’t incredibly stressful and sad. If autism didn’t have its grip on our boy, he would be in five year old glory anxiously awaiting his presents and asking Alexa where Santa was in his journey. He would be fighting with Jillian over who could find the Christmas pickle first on Christmas morning. And he wouldn’t be slumped over in a chair watching family photos go by on the screen from 2017.

Christmas morning wasn’t much different. As we began to unwrap presents, Mark retreated to the back of the playroom and surrounded himself with his toys, and sat with his back to us as he flipped through familiar books. We knew that Mark’s pile of presents would be opened last and we would be doing the opening. We knew that the mess would stress him out and it did. And we knew that he would have very little interest in participating.

We did manage to give him presents that brought that unadulterated joy and excitement that we all hope for, even though it wouldn’t be something anyone would generally buy for a five year old, like a book about castles, a new version of his ratty Fisher Price puppy and a musical trolley hand picked by his sister. Surrounded by the objects of his affection he beamed. And just that moment of his bliss made my morning. I hovered over that photo on my phone of him happily clutching his prized possessions and felt a sense of accomplishment that we had achieved some level of joy for him.

And then I watched as he began to line his toys, along the couch, on the ottoman, in a basket and on the table. He carefully positioned them equidistant to each other, and then crouched into different positions to study the angles of his creations. He was happy, there was light in his eyes and he was at home. And even though I knew he shouldn’t be lining, and he should be playing more appropriately with toys, I basked in his happiness because I knew that it might disappear rapidly for no apparent reason.

The days that followed the holiday were filled with cleaning, constant decluttering, cursing at the WiFi when the signal would weaken and drop Mark’s show, hiding toys that would cause unexplainable tantrums, and feeling defeated each time we would discover that he had an accident despite our best efforts to stick to the potty schedule.

People have asked me this week how our Christmas was, and I give a socially digestible answer but really it was hard and exhausting, because it’s always so with holidays. Each year they are a bright, glaring reminder of where we are, where we’re not and what we are pretending to be.

The Messy Middle

I had a doctor’s appointment last month and while waiting for the doctor the medical assistant asked me where I vacationed this summer. I answered that I spent my entire summer sitting in the doorway of the half bathroom waiting for my five year old to pee. In fact, I had gotten quite good at nursing my baby sitting cross legged in front of the toilet while I made sure said five year old didn’t escape. I’m pretty sure the medical assistant was happy that my chart was updated and probably sorry she asked. And just last night Jillian told me about how she had to a write a narrative in school about where she vacationed this summer and felt a little funny since we didn’t go anywhere, or really do anything. Even so, I felt a strong sense of honor that I was helping Mark take one step closer to independence, and it was a personal challenge.

If I could potty train him, then I could do anything, and if I couldn’t, there was no soft place to land.

After a few days of training I found myself on the couch in my therapists office with anxiety through the roof. I gave her a run down of the weekends potty failures and explained that they very much felt like mine. Each time he would have an accident it was my fault. I didn’t get there fast enough, I didn’t time it well enough, I hadn’t trusted my math. I was assigning and assuming blame. Everything is so difficult to teach him. It takes so much repetition, patience and more repetition, and I honestly didn’t feel up to the challenge. I called another autism mama who had been down this very road before and she told me that through this journey I would earn my stripes; and I needed to, for my confidence and sanity.

As the weeks went on, he spent more and more time in underwear, and very slowly the carpet cleaner and disinfectant wipes made their way back into the cabinet. And by the time school was about to start we had successfully reached the goal of trip training. Mark would pee when we took him with no verbal or water prompting and he stayed dry between trips. And his reward? Music! It took us weeks of giving cookies, his sisters off-limits Legos, new books and toys, before we figured out that this precious boy of ours just wanted music. We would play “Hey Ho” by the Lumineers each time that he was successful and it was like Christmas for him.

Eventually I began to ponder and calculate how we could teach him to initiate and communicate his desire to go. We added a PECS card to the door jam of the bathroom with a picture of a toilet and on a few occasions Mark took his therapists hand, grabbed the card, said “go to potty”, and went to the bathroom. We had arrived!

The confidence that I lost over years of fighting and failing to teach him the most basic things was coming back and I felt so proud.

And then a few days before school started Mark fell and broke his arm.

As I was reading the orthopedists notes in the patient portal regarding his office visit, I read the line “due to the patient’s autistic severity I recommend a cast”. Mark’s break wouldn’t typically call for a cast but because he wouldn’t comply with a sling, a cast was the only option, apparently. Autistic severity. All of my confidence was lost and I felt so foolish for thinking that just because Mark began to recognize letters and numbers, that we were somehow escaping the confines of the diagnosis that I hated. I felt silly for celebrating his milestones and upset that in a matter of a five minute visit the doctor concluded that his autism was so severe that we couldn’t discuss less constrictive options. My confidence was shaken and I felt that familiar heartbreak all over again.

And Mark’s confidence must have been rattled too. You wouldn’t think that a broken arm would unravel potty training but it, or the start of school, has. We are now back to going through multiple pairs of underwear, cleaning the floors, and my deep sense of failure has returned. I live and die by Mark’s successes and pitfalls, and this is killing me.

And just as I began to throw myself a pity party, Mark’s stimming behavior has ramped up, and a new tick has been added. He now abruptly yells and accompanies the shout with a head jerk. I see him shaking his head a lot, and the vocal stims are in full force. Or maybe I’m noticing it all more because the words “autistic” and “severe” are reverberating in my head.

His SCN2A diagnosis also looms in the background as I read the age of seizure onset for each new child that is introduced in our online community group. Every new behavior makes me question whether it’s seizure activity. I had a dream last night that Mark was having a seizure and we were racing to the ER. It was so real and this morning I felt a sense of somberness knowing that everything could change just that quickly. His regression of potty skills make that worry even more real and I begin to imagine how very different our life would be if seizure control became the new goal.

On Friday night I found myself slumped over my phone at the dining room table watching videos on You Tube of different types of seizures. I was Googling. And I was worrying.

A question that my therapist asked me sometime in the middle of the summer of potty was, “what do you need to have peace?” And I’m still puzzled and stumped by this question, because I am far from having peace as I generally feel pretty tortured.

I had hoped to return to blogging at the start of fall with a happy report that we had done it; we had accomplished the seemingly insurmountable goal of toilet training and we were ready to wave from the other side, but instead we are in the messy, painful middle. And maybe it’s helpful for others to see what the middle looks like as we are often too quick to share where we started and where we landed.

So I’m waving hello, sending a post card from potty boot camp, and hoping to arrive home eventually.

Be Gentle

A few weeks ago I received a paper in Mark’s preschool folder with two of the most anxiety provoking words for a special needs parent, field trip. Mark’s class would be visiting the theater on campus where I work for a kinder concert. I couldn’t imagine sending him anywhere outside of his routine without one of us going along so I requested to meet them at the theater; after all he was literally in the building next to my office. So when I found myself waiting for the bus inside the lobby a pit of worry set in and I quickly questioned my chaperoning choice. Mark is getting larger and more difficult to handle, and I’m a very petite person. Then a deep feeling of sadness took over as I began to think about how my presence doesn’t seem to really fix anything. Unlike when the baby falls and quickly recovers at the sight of my face, for Mark, seeing me may be a novelty for a moment but it doesn’t appear to change much.

Mark did better than I anticipated, adjusting to the new setting as we followed along to our seats in the theater, but then when the expectation was to remain there and be quiet, it was clear that I had a fight on my hands. Just as soon as I began counting the minutes until we could leave I realized that I needed to change his diaper. Fully aware that there were no places to change him in the building that wouldn’t freak him out I took his hand and lead him to my SUV in the staff parking lot. It was cold, raining and I had very little space in the back hatch area thanks to the boxes of clothing that needed to be dropped off at Good Will.

He cried, we wrestled and I prayed that none of my co workers would pull in next to me to see me struggle.

Once I finished the diaper change we headed back into the building and I prayed that he wouldn’t grow upset once he realized we weren’t leaving. I just kept telling him that once we got inside we could listen to music. We made it back into our respective row and our previous physical altercation resumed as I fought to keep him from escaping. At first he was subtle, pretending to cuddle in my lap in an attempt to spin into the aisle, and then he resorted to trying to body slam me. My jaw and nose absorbed some of the force and then I looked up and realized that an entire row of kindergartners and their teachers were staring at us. Mark’s vocal stims, loud noises and attempts to overtake his mother not surprisingly distracted them from the musical selection on stage. I also started to worry about not being able to handle him in the presence of his teacher and assistants. They handle him everyday and here is his mom unable to do so. Feeling the familiar sense of anxiety and dread, I decided to practice my newly discovered self talk. I began to silently say “I know this is really hard, don’t worry about people staring, just continue to love on him. You’ll both be OK, and this will pass soon.” I felt myself relax and my silent internal monologue was right. With the help of showing Mark photos of his little brother and telling him to listen to the music, I kept him in our row and it was over relatively quickly.


A few days before the field trip I listened to a Ted Talk by Kristin Neff who explained that she was a self compassion evangelist, spreading the good news of treating ourselves kindly. Being nice to yourself probably seems like a given but for me it was foreign. And I didn’t realize just how foreign until the end of her Ted Talk when she told the story of her own autistic child throwing a wicked tantrum on a transatlantic flight. Knowing that there wasn’t much she could do to stop it mid air, she paused, focused, placed a hand over her heart and in a sweet, compassionate voice said to herself “This is so hard right now… I’m so sorry you have to deal with this, but I’m here for you.” Upon hearing such inward focused gentleness the tears that I’ve held back for months burned my eyes. And it was in that moment and during the subsequent therapy session when I realized just how awful I had been to myself.

My therapist had asked me to go deeper, and to think about what was beneath the fears that I had unpacked. It took me some time but I realized that though I feared that my children would die, even more so I feared that it would be my fault. I would be responsible. I truly believed that every challenge we faced was my fault.

And it was this assignment of blame that plagued me and lead to the constant berating that has become the norm in my head. Common inner sayings would be,

“Why are you so tired? Now that you put the kids to bed go back downstairs and clean the kids playroom. You know that Mark thrives in a clean space. What if he or the baby chokes on a Barbie shoe?”

“Mark needs more variety in his diet. His restricted eating will only worsen if you don’t figure out how to work in new foods.”

“Mark isn’t talking because you don’t work with him enough.”

A lazy, incompetent failure is the message I had been sending myself on a daily basis for quite some time and deep down I had also adopted the idea that I was ultimately to blame for Mark’s diagnosis.

Clearly I have some work to do. Blame doesn’t need to be assigned to everything and I need to work through why I assume responsibility for it all.

So when I was introduced to the idea of speaking so sweetly to myself I ran toward it with open arms because I had been so parched for kindness that I forgot what it was like to be treated this way. So in that theater, wrestling my sweet boy, I decided to make a small choice to be loving and gentle to myself. And in doing so, I made it through a challenging moment and was able to see that I didn’t fail Mark, and in fact I may have actually been comforting to him.

Later that evening I said to him “Mark, it was so special for Mommy to go with you today.” And surprisingly he responded and said “special”.

He’s pretty special, and I’m trying to work toward embracing that his mom might be too.

Space to Be Brave

In the very early days of Mark’s autism diagnosis, I found myself in a little, darkened observation room, perched in front of a two-way mirror watching Mark during his special group speech program alongside other parents, who I would learn later were at the exact same spot on their journey. One of these parents has become a dear friend of mine, and as she put it when we first began chatting, she had unpacked her bags in the land of grief. She grieved what could have, should have and what she hoped would be for her youngest child of six.

Receiving a lifelong diagnosis for your child is a grieving process accompanied by all the stages of a loss. It’s tough to get to the point of acceptance, and often the path isn’t linear. We bounce back and forth between anger, bargaining, and sadness, flirting with acceptance but always hoping that our children’s lives will be better than professionals predict.

And while we’re processing our grief, we make brave choices to go out into the community with our special children because part of what we long for and grieve, is the ability to do things as a “normal” family. Perhaps we want to go out to a restaurant, pumpkin patch or a school function, we must make a brave choice to go forth and give it a try. And when this bravery is met with judgment, lack of understanding and stares, we question our choices and ourselves.

So when I received a distressed text from my friend yesterday afternoon that a couple of other moms stared at her son at a picnic at their church, my heart sank because I’m familiar with the risk she took. The risk to join the world and not have someone keep their child at home or stay at home herself. This is a choice we make each and every time we have an obligation outside of our normal routine. Who stays home, who goes and when do we be brave and give it a shot. So when we make the bold move to take our beautiful, special child out in the world, we shouldn’t also shoulder the burden of educating people, especially other parents. Raising a child with special needs is an enormous responsibility. Educating and encouraging people to demonstrate grace and acceptance should not be a part of this responsibility.

So to the mothers who stared at my friend and her son, this post is for you.

When you chose to attend this picnic, you probably didn’t think about who would be there and if the number of people in the crowd would overwhelm your child, create a social story to prepare your child for what was coming, or wonder specifically what food would be available to determine if you would have to pack your own food and I assume you didn’t carefully craft an exit strategy so that your other children would be least impacted, because that’s another one of our responsibilities, lessening the burden of difference for the siblings; creating an illusion that things are normal when everyone in the family is painfully aware that they are not.

Please understand that within the walls of our homes, our children are free to be who they are, special needs and all. And we are free to be their parents. The differences often melt away, and we feel the freedom to love our children for who they are, and focus less on who they’re not or what they can’t do, and take a rest from the grief. The problems arise when we leave our bubble, which made my friends decision to attend a function with her whole family that much more admirable.

I’m familiar with the feeling of the stares. When I’m feeding my four-year-old purée from a baby food jar because he never got the hang of pouches or grabbing his face with my open hand at his non verbal request or weathering a tantrum because Daniel Tiger stopped playing on my phone, I feel tense, waiting for someone to say something, practicing my shaky speech in my head, preparing for the moment I would launch into my emotional defense of my son. So while an outing to Panera or to a church picnic is pretty benign for most people, it’s really quite hard for us.

So the next time you notice a family, who may appear to have a member that’s different, remember what a brave choice it may have been for them to be in your presence. And the best thing you could do, other than the obvious refrain from staring, is to make our brave moments teachable moments for your children. Teach them kindness, grace, and acceptance. Talk with them in the car on the way home about how some children have challenges but it makes them no less. Help them to see what a gift it is to celebrate difference. Show them how great it would be to befriend our children. And if you can do just one of those things, you will be making a significant difference in the world for everyone and no longer will it be our responsibility to educate the masses. We can enjoy more spaces outside of our homes knowing that we won’t be met with stares and judgment, making our grieving process just a little easier and allowing our children the opportunity to participate without feeling like they are unwanted. Stop staring, accept difference boldly and demonstrate the grace that special needs families most desperately need, and allow us the space to be brave.

 

Hard Things

The night before I went into labor with our third baby, I was feeling restless and wrote a draft blog post about facing challenges and doing things previously thought impossible. If someone had told me years ago that I would have a child with special needs and a rare genetic disorder with no cure, and known deaths among children that share the diagnosis, I would have never thought I was capable of enduring such a thing. Yet here we are, and somehow God has conditioned me to handle the bends in the road, and equip me for the dark times that we face. So when I began to consider how we would bring our next family member into the world, I thought about delivering naturally, and how this was also something that I surely was incapable of doing. And in addition to this challenge, I was also thinking of my family and all that they have had to endure in the past few months.

My grandmother’s health has dramatically declined following a cancer diagnosis which began to reveal itself after she collapsed at my sister’s college graduation in May. The picture below was taken an hour before. I have watched my parents and sister rise, turning into patient, selfless care givers, providing round the clock, direct care in their home. My mom turned their dining room into Grammie’s room equipped with her hospital bed and curtains for privacy. My dad wakes at night to administer medication. They have been researching and preparing meals to help her fight her cancer and have been diligently providing personal care each day and night while she tries to regain her strength for more chemotherapy. If you would have told my parents and sister that in a few short months their lives would be turned upside down as they weathered this cancer storm with Grammie, I’m fairly certain their reaction would have been similar to mine when I think about facing the road of special needs, but they are powering through and despite the ever changing challenges of their present landscape they have risen to the occasion and provided a level of care that can only be admired.

 

 

People have said to me, “I don’t know how you do what you do with Mark”, and other than just doing it because I see no other alternatives, I see now where I get it. We rise, and we love, period. And this leads me to think about a mantra from one of my birth podcasts, “you can do hard things”.  

I wasn’t entirely happy with the blog post I had started, shelved it and went to bed. I then woke up at 4 am in preterm labor facing the unknown, and just like usual I took full responsibility for going into labor too early, not even considering that perhaps this could be a good thing.

I’m pretty good at blaming myself. I’ve really perfected that art over the years. As we embarked into the special needs world, I enrolled Mark and our family in as many research studies as possible, and like many of Mark’s clinical assessments and evaluations, these opportunities usually involved in depth questioning regarding my pregnancy and delivery of Mark. I even did a two-hour interview just about everything I did, ate and experienced while carrying him. I have relived it so many times, scrutinizing every decision. Each time I would answer a question like medications I took or interventions I had, I wondered what it meant. Whatever it indicated, my assumption was that it was clearly bad, and obviously my fault. 

So when we began talking about having another baby I spent an entire year trying to be as healthy as possible keeping these types of evaluations in the back of my mind and trying to maintain my tight grip on control. 

I found a nutritionist that specialized in treating neurodevelopmental disorders in children with autism and prevention in pregnancy. I did a number of tests that drove a tailored supplement and nutrition plan in anticipation of a future pregnancy. I bought a pill suitcase and began taking over 15 capsules of vitamins and supplements per day. I tried to stick with whole foods, including lots of vegetables and fruits. I stopped using conventional deodorant and switched to using a salt rock.  I drank out of glass containers. I changed all of our cleaning products over to natural alternatives. I had my hair tested for metals and toxins and then began using magnesium baths to detox.

Every new autism study that provided a clue at a correlation prompted action from me. I skipped the flu shot. Took extra Vitamin D. And when I did become pregnant I avoided every intervention possible. I didn’t want ultrasounds or extra Doppler exposure. I turned down all vaccines and began exploring options for natural child birth. I enrolled us in a hypnobirthing class and felt a little sheepish that I was a third-time mama taking a class that’s clearly designed for couples expecting their first. But I was determined to bring our baby into the world with as little intervention as possible so that if ever we end up on a similar journey as we did with Mark, I could answer “no” to those questions and alleviate the tremendous guilt I’ve carried around that I did something to cause Mark’s problems. 

I realize now that the PTSD that is so common among parents of children with special needs was coloring my judgment and fueling my neurotic efforts. Mark was born with a genetic condition that was not inherited from us. I knew this, yet despite the science behind it, and the fact that I tell other mothers on a regular basis that their child’s diagnosis is not their fault, I still felt narcissistically responsible. 

So when our son Luke made it abundantly clear that he was coming into the world five weeks early, my anxiety kicked in and I felt so upset that despite all of my best efforts this baby was going to be early, setting him up for possible delays and potentially other life threatening problems. The number one question I am asked on a developmental questionnaire pertains to the gestational age. I would now have to check the premature box.

Once we determined that my labor could not be stopped, I gave in and began employing all of my hypnobirthing techniques. I closed my eyes and breathed through each powerful surge and after many hours of slow, uncertain labor, I began to panic. I told Ike that I couldn’t do it. I was shaking, feeling less confident as I worried about our now preemie baby. The special nursery bed was set up. The neonatologist was called. I was overwhelmed. It was too hard. Ike encouraged me, reminding me that this is what we worked for, and the reason I made him spend several Sunday afternoons in a yoga studio watching natural child births, and ultimately what I had wanted. Within minutes Luke was born.

 

 

After he was placed on my chest, our midwife pulled up the umbilical cord to show us this fat, tight true knot in the cord. She said it was divine intervention that he came this early. I later Googled this and words like restricted growth and still borns popped up. It became clear that had he gone to term the outcome may have been much grimmer. 

 

 

When we returned home, I met our nurse we hired to encapsulate my placenta. (I’m aware of how controversial this is but I did my research and felt like it was a good choice for me).  The first thing she said was “did you see that true knot? I saw it and how thin the cord was on the one side and said a prayer of thanks”. 

 

 

How loud does God have to be for me to hear Him? This wasn’t about me, or about what I did or didn’t do.

 

All of my hippy dippy crunchy granola shenanigans couldn’t get in the way of God’s perfect plan.

 

Nothing was anyone’s fault, it was God’s will. Luke’s plan unfolded the way it was intended and so has Mark’s, genetic mutation and all. No mistakes. This is part of their and our journey.  

I watch Mark do hard things every day, and he has inspired me to realize that I can do hard things, like natural childbirth, and having the strength to be his mother and advocate, and so can my family in their intimate care for my grandmother. We rise and we do so because of God’s goodness and grace.

 

The Unsung Heroes

I have had the unique opportunity to connect with people who are curious and concerned about autism, usually in terms of a loved one. I always make time for these calls, texts, and emails. The ones that I seem to get the most and those that really touch my heart are the calls that come from grandparents. They’ve noticed the differences in their grandchildren, and have been worrying for some time. They gently try to encourage their children to seek another opinion when all too often the general pediatrician dismisses the raised concerns. Parents are reassured with such comments as “all children develop at their own pace” “boys are slower than girls” and “let’s wait until they’re older to jump to any conclusions”. (I could write a whole post about physicians and their very flawed “wait and see” logic but I’ll save that for another day). And more often than not, the parents of the child of concern are in a very common place of denial, retreating from the fear that something really could be “wrong” with their child. This usually delays intervention and painfully strains relationships mainly between mothers and daughters. The story I’ve heard time and time again has been, that if the grandparent continues to push them for help or point out what they see, they will lose contact with their grandchildren. I get it. I really do. I understand that as a parent we want to believe that our children are perfect, that others jump to conclusions and that we know our children best. Yet, I’ve also learned that it’s a very vulnerable, frightening place to be to accept that my little one is potentially telling me something, even though I’m not prepared to hear or see it. And even though I’m not a grandparent, I can also see and hear the pain that they feel watching their child struggle to see a situation clearly without defensiveness. The helplessness and distance that they experience are so heartbreaking and yet their love for their children and grandchildren is so strong that they will continue to push even though it could mean that they may damage their relationship.

 

And so today, for Mother’s Day, I recognize and acknowledge the unsung heroes, the grandparents in our life who have weathered this storm with us, with grace, love, patience and understanding. Because there was the day that I was in denial and angry at the assumption that something was wrong with my baby, yet our parents walked with us as we waded our way through the dark waters of the diagnosis and continue to hold us up on our journey.

 

When Mark was born we were living with my parents because we had sold our house shortly before I found out that we were pregnant. And when we brought Mark home from the hospital, I settled into days of my maternity leave where I would visit with my mom on breaks as she worked from home. I would swing him on the back porch and she would come out and chat with me. As the weeks went by, Mom began to notice the differences. Mom would comment on his lack of eye contact, staring at the ceiling fan and unresponsiveness to us. And I would shrug it off, knowing deep down that something was wrong and yet not being nearly as ready to face it. I look back at the beginning and I see that my mom wasn’t ready to face it either but she was concerned, worried, and prepared to put her own feelings aside to get him help. She’s my mother and his grandmother, and she was far more equipped than me.

 

 

Fast forward a year later and the signs of autism, if they weren’t obvious before, became painfully clear. We had moved into the house we built and when we visited my family on Sundays, we would come in the door and Mom would greet the kids excitedly. When Mark wouldn’t react or flinch, I could see the concern reflected on her face, the concern I felt and buried deep inside. I’ve always struggled to outwardly express my emotions and I felt overwhelmed to see my feelings on her face. Even at that point, I was still grasping at straws trying to find other diagnoses that fit him. I even went as far as to take him to a specialist at the University of Maryland because I was convinced that he had a vestibular disorder of his inner ear. It wasn’t autism, he just needed surgery to correct the imbalance and it would stop the spinning, and all would be well. There were many of these rabbit trails my family watched me go down in an effort to explain away something that terrified me.

 

Once Mark received his diagnosis, the denial had waned, and it was replaced with aggressive action. If I couldn’t avoid it, I needed to fight it. I quickly signed Mark up for an intensive speech program. My mom used her leave time to go with me several days per week to have Mark be seen at Kennedy Krieger for intervention by a speech pathologist. She sat on the floor with me as we tried to engage Mark in the speech exercises while we watched him retreat to corners of the room to spin in circles. It was hard to watch and I know it broke my mom’s heart just as much as it broke mine.

 

A couple months later, when my aunt offered us the opportunity to go to California for an experimental round of brain treatments, without hesitation, I jumped at it. My parents drove us to the airport, and stood with me, two years ago on Mother’s Day, as we watched Ike helplessly board a flight with Mark who had just turned two the week prior. As we ate at Panera that night to celebrate Mother’s Day, I was on edge and nervous and I could tell that my parents felt similarly, but they were brave for me, and for Jillian. We hoped that this brain treatment would “fix” him and that he would come back, recognize our faces and give us the hugs that we had longed for, and yet that’s not what happened. Once again, my parents took Jillian and me to the airport and we waited for Ike and Mark at the gate, and my aloof little man looked all around but not at us. Again, I could see and feel my feelings coming from my parents.

 

 

A few months later, Mark started a program that would require me to drive him an hour and a half away four days per week. Once again, I jumped at the chance, signed him up and determined that I would figure out the logistics later. And we did. My Dad adjusted his schedule at work, working four ten hour shifts and using his day off to drive Mark down the road. Ike and I took our turns, and we even called upon my sister and her boyfriend. As time went on, my in-laws took time off from their jobs to drive him. We were determined to get him there and our village stood behind us.

 

 

And after Ike began his new job, and had no leave time accumulated, my mom would take off work just to drive with me to far away appointments, those that would involve wrangling a screaming child as I strained to hear what the doctors were saying while navigating congested cities and traffic. This was even in the midst of her cancer diagnosis, surgery, and treatment.

 

 

My mother in law eventually retired and became Mark’s caretaker during the day while we worked. Both my father in law, Mark, and Becky would take him to school several days per week, and still do, driving him to KKI, as well as his other therapy appointments. And over the past year, Mark has become quite the handful, screaming for reasons we can’t understand accompanied with messy bowel movements multiple times per day. Becky would wrestle him on changing tables that were exceedingly too small and in the front seat of our small sedan that we used to drive him to school, a feat I still can’t wrap my head around. She has a remarkable ability to roll with the strange punches and that has blessed our family in so many ways. Yet I know that it wears on her, much like me, to deal with the screaming that we’ve been experiencing as he struggles to acclimate to new places, new faces, and new things.

 

 

On the few rare occasions where Ike has been gone overnight, and Mark seems to know, and not sleep, Becky has come over early in the morning so that I could shower and put myself together for work. And the day he broke his arm she sat with me while he wailed in my arms waiting for the x-rays that would make him wail even more. On the morning of one of Mark’s ear surgeries, Grandpa Mark came to wait with us. They weathered that storm with us, ahead of many to come, just like my parents.

 

 

I call my Mom most every day and ramble on about whatever drama that particular day holds. Screaming fits before bedtime, poor transition to a new therapist, push back from the school system, frustration over foods, health insurance battles, and this week when a parent made a snide remark about Mark’s tantrum behavior, she felt the same intense rage and hurt I did as I struggled to defend my little boy who was confused and in a new classroom for the first time.

 

There are countless stories. My parents and Ike’s parents have been stretched, molded and bonded to this little boy in ways that I couldn’t have ever imagined. Mark knows how important they are too. He lights up when he sees them, eyes sparkling and arms wide open. All four of our parents support us in such beautiful, unique ways. Their selflessness is something that is born from the love of a parent and transformed into that of a grandparent of a special needs child. I know it must be hard to watch us struggle and not be able to tell us confidently that it will be ok. And I know that it’s even more difficult to watch Mark struggle through the everyday things that come easily to most children. Yet just as the lows can be quite low, the highs are remarkable. The next best thing to watching Mark do something new for the very first time is sharing it with our parents. There is no joy like hearing them beam with the same joy that we do when Mark rode his tricycle for the first time or recognized himself in a photograph. So this Mother’s Day, I give thanks to our mothers and fathers who raised us and who are now holding the ropes as we raise their grandchildren.

Rhythms of Grace

Last fall I sat in the waiting room of a doctor’s office holding a copy of my ultrasound. To my left and right were young couples gushing over their little fetuses on the sonogram pictures. I was holding a photo of my fibroid friend who had decided to set up shop in my uterine lining and I was waiting to talk to a doctor about my surgical options. As the mamas-to-be that surrounded me all discussed their current sleep deprivation, I thought of my own. Theirs will end eventually when their sweet little ones begin sleeping through the night and I sat there with the stark realization that I may never have good sleep given Mark’s general disinterest in sleeping. I felt the dread of comparison and anger began to overwhelm me.

Several weeks earlier my mom had been diagnosed with breast cancer, and just a month before that our son received the rare genetic diagnosis. The reality I faced was suffocating and terrifying. My dad passed away when I was three years old leaving my mom alone to raise me by herself. We have a special bond, she’s my person. So two of the most precious people in the world to me were facing big medical challenges and the helplessness was crippling.

I felt like my little medical blip on the radar was just more salt in the wound. I cried that day in the waiting room and felt ridiculous. This was nothing compared to anything else happening to my people. I barely cried since this entire storm of doctor’s appointments began the year before with Mark. And when Mom called me at work to tell me that she had cancer, I was just stunned and dumbfounded. This wasn’t supposed to happen. My dad passing away when I was little was my turn with tragedy, I wasn’t supposed to get another one. And for this to happen to her was such a blow. Mom walked with Dad through his suffering and his eventual passing. In my mind, a cancer diagnosis was the worst thing that could happen to her. Not now. This was not good timing. I suppose there’s never an opportune time for cancer but now seemed worse. I was trying really hard to be brave for my family but this day I cried because I was angry. So incredibly angry about many things, but mostly angry with God.

I’m fully aware that life is not devoid of suffering, and that in suffering we are to draw nearer to the Lord, but that is absolutely not what I felt like doing.

I tried to see the silver lining. I tried to think about how I could use this season to be a blessing to others, but those thoughts and feelings felt fake and forced.

I didn’t want to hear that everything happened for a reason. Or that someone’s neighbor or friend had cancer and they survived or didn’t. And most people didn’t know what to tell me with regard to Mark. It was a rare genetic disease without a name. Nobody’s second cousin had dealt with that.

And I completely know that I am awfulizing, which is when we lament over all of the terrible things happening and then neglect to recognize the positive. I get it. It’s just where I lived for quite some time. How could the train go off the rails this badly?

And then in November, we faced a new, weird challenge. Radon.

At some point that fall, I thought that we should check our house for radon. Seems random I know. My boss had recently discovered that there was a problem in his home so I thought it would probably be wise to investigate the possibility in ours. After sending away a test we purchased from Amazon, we received the results. Our radon level was 413. As a point of reference anything above two is bad. Two. Not 200, two. The chart on the results only went up to 100, stating that our risk of lung cancer was exponentially higher if we had anything up to 100. Our level was 413! Thinking it was a mistake, I called the First Alert company. Nope. It was so high, they tested it several more times to be sure.

Evidently, our house was built on a large bed of shale, which is essentially uranium and the source of radon. Super. So just like any other problem, I dove in head first to figure out what person we could get to our house ASAP to fix it. However, I quickly learned that there are only a handful of people in the state that mitigate radon, and the person who actually answered his phone couldn’t come to our house until the end of the year but did manage to share that in 25 years of doing this, he had only ever had one other home as bad as ours. Well, you know, we go big or go home!

So if we’re keeping track for awfulizing purposes, we had the following going on here:

  • Son with rare genetic condition with no name or prognosis with new fear of seizures
  • Mom with aggressive form of breast cancer
  • Imminent surgery for me
  • Home built on natural toxic waste dump, with our lung cancer risk being the same as if we all smoked a pack of cigarettes every day

The Nathaniel Ratecliff and the Night Sweats song called S.O.B. played on the radio the morning after our radon problem surfaced. I’m not much of a drinker, and I limit my use of foul language but I heard this song and just starting laughing, so hard that I started crying. I drove to work, cranked the song, and just cried the ugly cry. It was my white flag moment. My “I give, you win”.

Never was it more abundantly clear that I was not in control than at the end of last fall. Control is such a continual struggle for me.

I didn’t even know how to begin unpacking the baggage I was now dragging around. Feeling powerless, many nights I would sit with Mark as we “watched” the music. I would play his songs and he happily sat on my lap, staring at the screen, as I wrote blog posts I never shared. We also watched the videos of the SCN2a children. Mark loved the Rachel Platten songs that accompanied them, and they became some of our theme songs. And slowly over time, I began to realize that my job on this earth is not to solve the problems, any of them really. Instead, it’s to join alongside in the trench. That’s my job. Be there. Be there for the people I love and to teach my children to do the same.

And so I went to Mom’s first chemo. I rode along to Hopkins for the second opinion. And I helped Mom pick out her wig when her hair fell out.

I drove Mark to his therapy appointments, held him during medical procedures and cheered like crazy when he finally figured out something that had been challenging him for months.

mom-and-mighty

I lived in Jillian’s world of anxiety, trying to make her laugh in a sea of scary things.

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And I threw myself into fundraising events for SCN2a research.

We marched on, we showed up and held each other’s hands. Things, of course, aren’t perfect now. Mom still has a port in her chest for one more treatment. Mark is three and a half and just figured out how to clap. And our basement is torn apart because of the work that Ike performed over the past year to thankfully remedy our “little” radon catastrophe. Yet despite the slow pace of our progress, God has grown me, molded me and shaped me through this season of uncertainty. My anger has dissolved into thankfulness for His grace and goodness in this tough season, and for never abandoning me even when I abandoned Him.

I recently ran across this version of Matthew 11:28-30 (MSG)

28-30 “Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.”

 May we continue to hold each other’s hands, as we live freely, and lightly and learn the unforced rhythms of grace.

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An Open Letter to the Parents of My Son’s Future Classmates

Over the weekend Jillian had a soccer game at our local school grounds. Ike was away on a camping trip so with the help of my mom we wrangled both kids that morning. Mom and I took turns taking Mark for wagon rides around the middle and elementary schools. As I pulled him along, listening to the games in the distance, I looked at the school and felt a pit in my stomach. He might go here someday and I don’t know what that will be like. Nearby a dad was kicking a soccer ball around with his little boy who looked to be about Mark’s age, and immediately I felt that familiar special needs parent pang of hurt and jealousy wishing I was kicking a ball around with my son, but this time I just thought, “please teach your little one to embrace mine”. And so I began writing this letter in my head…

To My Son’s Future Classmates’ Parents,

Inside your cells lies a nucleus and inside that nucleus is a pair of chromosomes made up of DNA, which consists of nucleotide pairs, G, A, T, and C. When these amino acids are put together they make up your DNA. (Stay with me, this gets better). If you look at the strand of DNA, you would see that there are different sequences and they are broken down into genes. A gene is a string of nucleotide base pairs that create specific proteins, which are involved in every part of your body, from chewing to blinking to breathing. When you and your children were formed your DNA went through a process of translation of these base pairs. It’s a very delicate and intricate process that makes you who you are, and sometimes there’s a mistranslation, which causes a mutation. In many cases mutations are benign, but in my son Mark’s case, something didn’t transpose correctly in an important spot on his SCN2a gene, which for him, causes autism and a number of other challenges, punctuating his life, and ours. This could have easily been you or your child.

Instead of soccer or baseball, Mark spends his time in therapy learning how to match colors, recognize his name and communicate his basic needs. Last week I watched his teacher spend 10 minutes just getting him to sit in a chair to do his work. That’s ten minutes spent on a very simple motion and request that should be easy, but for Mark it’s not. Everything Mark can currently do has taken him 20 times longer than it probably did for your children. He spends an hour in OT every week working on climbing up stairs, using his hands together and learning how to hold on when he’s being swung.

He’s very quiet, and the few words he knows he can’t easily say and he has to be incredibly motivated to use them, but please know he understands what you say. Please let your children know that if they ever have the opportunity and privilege to be in his class that even though he may not be able to talk, he can hear them. He recognizes more words than he can reproduce.

He may do different things that are foreign to your kids. Right now he screeches and growls because the sound and feeling of the vibration feeds his senses. When Mark was diagnosed we learned that he can’t regulate his central nervous system naturally like most of us can. He needs things  like swinging motion, tight squeezes, and lots of movement to allow him to feel “normal”. Mark actually spends a lot of his free time sensory seeking or “stimming”. Sometimes he spins in a circle, becomes obsessed with corners of walls or runs without purpose. He’s just trying to feel good.

However, aside from the things Mark can’t do, and the odd things that he might do, I want you to know that despite these struggles, Mark is an amazing little boy. You’re probably thinking “of course she would say that he’s her kid”. And while this is true, I do absolutely adore him, I am in awe of how he overcomes so many challenges with so much joy.

Mark smiles all the time, even when most people wouldn’t. Every Wednesday I spend an hour in a play gym at an Occupational Therapist’s office and I watch him struggle to place the correct puzzle piece in the right hole. He gets upset, and wants to run as far as away as possible, but we push him through it and eventually he gets it, and my goodness, you should see him smile! If you ever have the pleasure to meet him, you will hear him giggle and I promise you it will be the best sound.

So my point in all of this is that our story could be yours. One wrong translation of your DNA could mean that you are the one trying to teach your three old that his hands can clap, or to use his voice to tell you what things he needs, you could be using your vacation time for medical appointments and spending every last penny (and pennies you don’t have) on medical and adaptive equipment. And you could be afraid, like me. Afraid that other kids won’t understand your child and that they would eat alone at lunch with perhaps an aide or their sibling, and no one would be their friend.

With the incidence of developmental disorders and autism increasing (the CDC currently reports that one of out of every 68 children will be diagnosed on the spectrum), there will be more kids like Mark. Children who have challenges, learn in different ways and have parents who worry like crazy about their well-being and how the world will treat them.

So my prayer is that in addition to taking time to teach your kids manners, how to be safe, and how to ride a bike, I hope that you also include how they could accept and welcome other children who are different and that being their friend is not a charitable act but a genuine interest in developing a friendship. Kids shouldn’t get awards for befriending children with special needs, the reward should be in the value of accepting, and loving their classmate openly and genuinely.

Be the change that is needed, show your kids how to love others without borders.

Sincerely,

Mark’s Mom

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Every New Beginning Comes From Some Other Beginning’s End

Several weeks ago, I sat in the waiting room of the orthopedic office waiting to check out. Ike had just taken Mark out to the car, sweaty and traumatized from the multiple X-rays, removal of his long arm cast and the placement of a new cast. This was the worst appointment of them all. As Ike laid across his strong lower half, I bent over and held his ears tight with my hands to deaden the sound of the saw next to his face. He shook with rage and fear, dry heaved and gagged, and fought us with every fiber of his being. He was terrified and there was no way to tell him the reassuring things you would tell other children. Of course I said them in vain, hoping something I said would magically make it through. And once it was all over and I was waiting to make the next torturous appointment, I felt the weight of our world, and I felt tired.

 

Mark & Mama

 

I’m tired of everything being seemingly so much harder because of Mark’s limitations. The tech who wrestled his cast onto his arm tried blowing up a rubber glove and giving him a sticker to cheer him up, and none of it made a dent. And if anything it just made me even more sad, almost like it was just another thing I was missing out on in life with Mark.

Ike teared up on the way home. We both felt overwhelmed with the mountains that stood before us. The broken arm was just a symbol for all the things that would always be more challenging because of the hand that we had been dealt.

 

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And then one day shortly before the final removal of his cast and after we had returned from our trip to Chicago, we decided to take away his pacifier when we put him to bed. And miraculously, he slept through the night. And then night after night, car ride after ride, and doctor’s appointment after doctor’s appointment, no paci needed. It was amazing.

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When Jillian was dealing with her pacifier addiction we bought a book that told a story of binkys being sent away to binkyland. After some resistance she decided to give it up. I thought for sure that Mark would be 7 or 8 years old and still need it. How could he get rid of it if he couldn’t understand the binkyland book? My obviously flawed line of thinking further added to my amazement that he had easily dropped the habit. He hasn’t looked for it, “asked” for it or really seemed bothered that it’s no longer a permanent fixture in his life. Tomorrow will be one month sans pacifier and meeting this milestone had shown me a few things.

 

Mark Reading

 

Mark will do things in his own time, his own way and he will surprise us.

 

And yet as exciting as this milestone has been, especially given how few we meet, I’ve been reluctant to share for a number of reasons but namely because as odd as it may sound, it’s hard to celebrate.

 

Recently, a fellow special needs mama cautiously shared her daughter’s accomplishment and I totally understood her reluctance.

 

There’s a sense of “knock on wood” that if I celebrate it, it will be taken away just as quickly and I’ll feel sheepish and foolish. Like when I shared that Mark waved “bye bye” in speech therapy for the first time. Do you know I have not seen him do it since? His words that have been spoken have only been heard once or twice, and I worry that he will regress, lose it all, and someday someone we know will see us out at a restaurant, and he will be sucking on a pacifier, despite previously kicking the habit.

 

And yet there are so many things to celebrate with Mark right now. He’s beginning to make animal sounds, really good, accurate and amazingly distinct animal sounds. He’s begun to point, attempt words, understand more and more of what we say, and he knows how to stop when running in the opposite direction and will come home when told. That one is huge.

Mark & J outside

 

And yet I’m still so afraid that someday he’ll lose it all. Several conversations I had at the SCN2a conference still haunt me. Parents shared how their children were making progress despite their autism diagnoses and then it started. The seizures. They took everything. And now these children need a number of devices and machines to help them function. So that is why it’s hard to celebrate: you never know when your current challenges and triumphs will fall into the “before” category.

 

But despite the obvious cloud that looms I am trying to savor the goodness of what God has been showing me.

 

Mark & Mama 2

 

In addition to the excitement surrounding Mark’s burst of development, I am also in awe of Jillian.

 

J in hat

 

Her first day of kindergarten was the same as Mark’s last day of his program. One was ending a year long journey and the other was just beginning. It created a weird sense of dissonance in our house.

 

Mark, Ike & J

 

At the end of Mark’s last day he brought home a social story that showed him pictures of his new classroom and speech therapist since this will all be different when he returns in September. In a way I felt sad that he needed something like this to transition, and realized quickly that this is the first of a long line of social stories that will help him cope with new things.

 

Jillian’s first day of kindergarten proved to be gut wrenching for us both. The morning was filled with crying, tantrums and a ridiculous attempt on my part to document all of it on camera.

J - first day of K

 

She arrived home that afternoon sweaty, tired and emotionally exhausted, just like me. She didn’t say much about her day despite my carefully crafted open ended questions. That evening our neighbor stopped by on his way back from his evening walk with their dog. Of course he asked Jillian about her day, and of all the things to say, she ran inside and grabbed Mark’s social story to tell Mr. Chip about Mark’s new digs at Kennedy Krieger.

 

 

The next day she went to work creating her own social story illustrating what her classroom looks like and what she will be doing. She took something from Mark’s world and used it to make sense of her own.

 

 

She is such a bridge builder. I often look at her and see her completely unphased by her brother’s loud vocal stims and screeches, the pacing in the dining room, the need to have some type of electronic device repeatedly playing the same melody and has almost no issue with the chaos that one little tornado creates in our house on a fairly regular basis. I think I don’t give her enough credit for adapting so gracefully. Fairly recently, he ran over to her, grabbed her arms, stomping his feet, making loud noises and just gripped on tightly. I hovered in the doorway watching, afraid that he was going to pull her hair or hurt her, and she just looked up at me, smiled and said, “it’s just his way of loving me.”

M&J

She celebrates him in the ordinary and helps me to remember to rejoice in all of his mighty moments. Jillian will learn a lot this year in school, as will Mark, but I have so much to learn from both of them.

Mark & J