If you’ve spent any length of time with me, you know you’ll often find me blabbering on about one of my three kids or my family in general. And inevitably, before long, you’ll start to hear bits and pieces about my daughter's communication disorder. It’s such an integral part of our story that it bubbles out like boiling water in a pot.
I started Nibble Cookie Co. because I needed the income of a working mom, but the availability of a stay-at-home. If I were working for someone else, I knew I’d fall far short of the physical and emotional needs my daughter requires. But God, in his infinite wisdom, had already given me the artistic tools and a resolute determination, which was all I needed to accomplish what seemed like an insurmountable task. Looking back, and I promise I didn’t see it this way initially, I was prepared for that exact time in my life. He makes no mistakes.
Childre, Party of 5.
Maryclaire has a disorder called Selective Mutism. She was diagnosed at just 3 years old. Although she was a typical verbal child at home, my husband and I were alerted that she was completely non verbal at preschool. Next, with our senses heightened, we noticed she was non verbal at church, at family functions, the gym, childcare…pretty much anywhere outside a few select settings. Still to this day, many social settings elicit the same response-silence.
We were actually quite lucky we got her diagnosis from our family pediatrician on our first visit to address her silence. Often in these circumstances, families are referred out to speech pathologists and neurologists for further evaluation and testing. Many kids go undiagnosed, or misdiagnosed, for years.
That September day, though, I was standing at the base of a mountain looking up. I left our Dr’s office with a 3 yr old Maryclaire and a list of local mental health professionals who at one time must have checked a box in a online database that they knew how to treat Selective Mutism. A part of me was relieved that I had an explanation for her peculiar behavior, but I was also overwhelmed, filled with trepidation and fear.
Maryclaire. 3 yrs old.
I had a battery of mental health professionals to call for my 3 yr old daughter. Stop for a second and let the weight of that sit on you. The words "mental health" and “disorder" sit heavy on a mama’s heart. Signs had been there from the beginning; the severe separation anxiety that she never outgrew, the resistance to make eye contact, the reversion to silence anywhere outside our home, the inability to interact with anyone outside our immediate family. My sweet, easily overwhelmed, chubby faced, first born daughter was staring into the monstrous face of childhood anxiety and I was right there along with her facing my own.
Now, lemme back up a minute and tell you what Selective Mutism is and isn’t. Most Selective Mutism is not trauma induced. It is the faulty, innate wiring of the brain. It is usually genetic in nature. Selective mutism is not a choice. Maryclaire does not choose silence. Although, she’s acutely aware of her inability to speak, it doesn’t mean she is making a conscious choice to be silent. The best way to explain this is this: Public speaking, for many of us, is one of our greatest fears. If you’ve ever been in front of a room, shaking and staring at your feet, and completely frozen up without any ability to make the words come out, that is what our daughter feels like every day in routine situations .
So back to the list of professionals I needed to call... I dove headfirst into that list with great anxiety. If you know me even a little, you know I hate talking on the phone.
Wordless Warriors is devoted to spreading awareness about selective mutism
I hate sounding unsure.
I hate asking for help.
I hate my fear of asking the wrong questions.
I hate standing out among the crowd.
I hate being different.
I hate not knowing what responses will be on the other end.
I hated everything about that list and the responsibility it placed on my shoulders in the face of my own social anxiety.
I hated saying over and over these words “Selective Mutism Disorder”, "3 yr old daughter” “help.” I am easily overwhelmed and with each phone call I felt suffocated by the uncertainty.
I, thankfully, didn’t have to make too many calls before discovering a semi-local therapist who put into place a therapy plan that included me working with Maryclaire every day at school. I was working outside the home at this point, and carving out daily time to intervene with Maryclaire in her school setting was challenging. But, as mothers, we rise to those challenges because really, what else are we supposed to do?
Surprise! It’s a girl!
We had a plan, and we followed it step-by-step with meticulous rigidity. Maryclaire was “supposed” to become verbal in her classroom in only a few short weeks. She wasn’t. We continued on and on and on with little progress. Finally, our sweet girl could verbalize to me or my husband in the classroom. She would freeze or reduce to a whisper if any teachers or students came near.
The months went on…January (oh hey there, surprise pregnancy), February, March, April, May…The school year is over. My girl is still silent. I have quit my job because I feel like I am drowning in my own anxiety. I cannot do this! I do not know what do to! I cannot fix her! I don’t know how to help her! I want her to be whole and healthy and typical. I want her to be able say, “I need to go potty”, “Can you please open my juicebox” , “I didn’t get one”, "I don’t feel good” ,“Will you play with me?” “I can’t find my jacket.”
The Summer finally brought a little relief, even though I was entering the last trimester of what had been a difficult pregnancy. I needed to catch my breath and emotionally rest from the disappointment of the school year.
Mc’s first day of Pre-K.
We broke up with MC’s therapist and decided a change of scenery would be good for her. We enrolled at a new preschool the following year, hoping God was leading us into the right environment. With our new baby due to arrive at precisely the same time Maryclaire would start school, and now being down a therapist, we entered the school year with little-to-no plan. We had read in research that a change in environment could be a positive trigger for Maryclaire, so we put our hope in that alone.
Baby Bea was born 3 weeks later and our world was turned upside down with a colicky newborn who did nothing but cry, refused to sleep, had feeding problems and required us to bounce her on a yoga ball 24/7. And me? Unsurprisingly, Postpartum Depression. I can only describe the next few months as pure survival.
We did little more to address Maryclaire’s Selective Mutism that year. The obstacles of feeling defeated from the previous year, maneuvering school administration combined with being attached to a colicky infant were all my avoidant personality needed to retreat. We started play therapy when the fog seemed to lift just the tiniest bit. In my honest opinion, it didn’t take me long to figure out it was a waste of time and money. Now I know play therapy is not a recommended form of intervention for Selective Mutism, but in that moment we were driving on unknown, backroads without GPS. Hindsight is 20/20, right?
Another school year closed. More silence. Kids are curious beings, and they are asking why Maryclaire doesn’t talk. They notice she’s different. Teachers are baffled. She has other peculiar behaviors. I even wonder if she could be on the spectrum. She still cannot advocate even her most basic needs. I am deep into avoiding all these things because of my own anxiety (hello avoidant personality i.e. my defect coping mechanism).
Pictures from Maryclaire’s preschool days
I wish I could tell you the story gets better here. That there was a beacon of hope and an obvious angel sent down to guide us through this difficult time. Do this! Go here! There wasn’t. Sitting on the horizon was Kindergarten and our ultimate decision to homeschool.
Nibble Cookie Co. still wasn’t anywhere on my radar at this point. I hadn’t decorated a cookie in over 2 years. My plate was already full. My emotional capacity spent. It was a hard season that essentially lacked joy, but not hope. I have never given up on hope for Maryclaire.
The story is started but not near finished.
We are more than our hardships.
We are more than a diagnosis.
We are more than our fear.
I know in my depths the God who created her would not abandon her in needs. But we hadn’t yet been afforded the vision to know what to do or how to do it.
And sometimes, things must get worse before they get better.