Where are my people?

This was the post I was working on when the US recognized the pandemic and my world shifted. I found out about the announcement of the lockdown on Ezra’s birthday. The baby had turned two and we were trying to swim in new waters of a new diagnosis. At first I was at ease and calm and felt confident that our nation could pull together and have Covid whipped within the month. I had something else on my mind. My worries were not with Covid but with Ezra. So… here it is. My last pre-pandemic post published a year later.

Navigating being a mom is a challenge by itself and I’m constantly worrying about if I am being the best mother for Henry and Ezra. Every mom takes on and absorbs an array of roles for their kids: chauffeur, coach, personal assistant/ calendar keeper, tutor, cheerleader, chef, maid, protector, comforter… and on. When your children have extra going on in their lives, the parental roles start blurring. A parent of children with special needs add many other roles like advocate, early childhood education teacher, nurse, occupational therapist, physical therapist, and speech therapist to their resume. A realization smacked me hard last week- I am mother first. I can’t be the primary teacher or therapist because I will fail. And being a failure to my boys will crush my spirit and soul. That’s why we have a village.

It takes a village. It truly does. Finding your village is so hard. At first you don’t know where to look or even what or who to ask for. Who can you trust with your heart? What are my child’s specific needs? Where does environment exist where they will flourish and bloom? After digging and researching and constantly inquiring, you move heaven and earth (or it feels that way) and start assembling your people. Our people are many. Our people are family, friends, teachers, therapists, doctors, nurses, and caregivers. Your people are just like anyone else in your life: here for a reason, a season, or lifetime. So you have your people now. You can depend on your people and you can ease your mind. Every need is being met. You’ve got your village.

What happens when part of your village tells you that there is no place for your child? Yeah, that happened. It happened in part of my village I never saw coming. It was in a place that was like a security blanket for us; they accept literally everyone. I never imagined when I sat down for a meeting that the end message would be, “There is no place for Ezra here.” I felt like I had been slapped.

All the emails pre-meeting said we would be deciding goals and new class options for Ezra. I began the meeting with my notebook. I never got to open it. I was prepped for it to be a “let’s look at next options for classes and times” meeting. Twenty minutes blocked off. Simple. About 50 questions I had already answered a few months ago about updates on every part of his life and our family life and 45 minutes later we had talked around our last circle and I just blurted out, “Is this the end of our journey here?”

My internal voice swirled wildly as I sat, nodded, and occasionally offered small comment.

“He can’t be in the baby one-on-one class forever.” No. He’s about to be 2. The one-on-one class tops out at 18 months, right? We did this option because classes were near full and you recommended we ease into classrooms.

“Asking a volunteer to take him on would be too much.” Every child in a group class has a volunteer. Every volunteer is trained. I know he’s active, but he’s too much for anyone to take on? “What if we recruited our own volunteer?” Blank stare. So I am hearing he’s too much. Too much for here: the most accepting environment there is supposed to be.

“He needs to sit in a chair without seatbelt to be in a toddler class and he can’t.” Ok. Henry needed extra support in a chair for circle time many weeks. Is this new?

“He can’t go to the autism class because all of those children have their own needs.” What in the world does that even mean? He’s a very busy guy but not aggressive at all. Do they mean he would dominate the room or that he is a threat?

“We don’t want to waste your time.” So I’m hearing it’s a waste of their time to have him. We are wasting time? Are his needs not worth the time?

“We can’t accommodate his sensory needs.” What? Is this not what we do here? Is that not the purpose of this entire place?

“He really needs a more regular schedule than twice a week.” Is that for me or them? This feels like a dig at me. Do I not do enough? Of course I don’t.

I’m exhausted. Mentally and emotionally tired. I thought I was strong enough to get through anything this meeting could hold. I knew we can’t stay here forever, but this? There is no road left here? I clamped down, misted slightly as I thanked everyone who has been a part of our lives for years now, and started getting my purse.

And then a 3 page spreadsheet was pushed across the table listing off every single organization in the area that offered any intervention. My lips were numb and I folded it and thanked everyone and was about to leave. Then I was asked how I felt. I sank. I sat back down and I ugly cried. Hard. Not from sadness but out of sheer frustration and anger. I grappled with and tried to justify what has just happened all while trying to swallow shoulder-shaking sobs. Tissues pushed my way. Did I want them to let me have the room for a few minutes? Nope. If I was going to break I was going to try to tell them why. Did I want a hug? Absolutely not. So I sat and tried to speak through shakes. I hate that feeling. I loath showing anything other than calm. Calm cheer. Calm sadness. Calm frustration. Calm. This was 100% not my game face.

I knew our journey would end here eventually. They had prepped me at the beginning during the summer that classes were near full and a wait for toddler class could be long. We were already looking for somewhere that met all our needs just in case an integrated class spot opened up anywhere else. I had been actively reaching out since the new year. The fact that our journey together coming to an end did not make me sad. The way it ended and the reasons given made me frustrated and angry.

The frustration came from expectations. I came into the meeting thinking there were options there. The anger came from the length of time it took them to reject him and way Ezra was rejected. I know my baby. He’s active. He is in the 99th percentile and athletic for his age. He is adventurous. He is funny. He’s curious. He has a mechanical mind and tries to figure out how things work. He’s a deep thinker. He’s soulful. He loves music. He’s affectionate. He’s extremely agreeable in a crowd. He loves to run and explore. He’s nonverbal for now. His attention span is small. He has some sensory aversions. He is almost 2 years old. He is NOT difficult, prone to throwing tantrums, aggressive, or has any severe behavioral issues. There is literally nothing about this child that would make me question his ability to be social. He would need an active volunteer. I realize he could knock over a less mobile child if not followed closely. We could work with that. His needs are valid. I know it’s a struggle to keep up with him, I know! I’m sure that is especially true if you are used to children less mobile and less active. Going from Henry to Ezra was a shock for me. The spreadsheet in front of me had places I had already called. Places that specialized in severe behavioral therapy, inpatient therapy, or places that didn’t hold classes in the toddler arena.

So I collected myself enough to get to the car and continued my frustration meltdown on the way home. And here’s the thing: I am mom first. Our village is not just resource material for us but partners in our children’s health, safety, wellbeing, and development. As parents we cannot fill the primary roles for medical and development roles. We will fail. I’m not trained and no matter how much I research I can’t provide what those professionals can. And let’s be honest, in many cases our kids perform differently and often better for others in social and classroom settings. We can be left feeling that we need to shoulder the main role in many cases, but we are mom and dad first. I am the love- giver, the boo-boo kisser, the cuddler, the game maker, the nurturer, the nose wiper, the read-a-story, the make-my-kids- feel-safe-and-empowered-and-happy MOTHER. I will not be a therapy- pushing, frustrated, frazzled wild woman they live with who constantly cuts corners in the house and in mothering to make time to furiously push a shape shorter and coloring book towards them. Not anymore. I refuse to feel like a failure in their development every day.

So if in the journey to finding your village, you feel that the people in it feel more like peripheral resource material and not partners with you in your child’s health and development, it’s okay to say goodbye. After I got home and thought seriously about what had happened, I felt relieved. It was clear from the beginning that they were either struggling to meet his needs or unwilling to provide the exertion it takes to keep up with him. Some members of the village are here for a reason, a season, or lifetime.

A reason.

A season.

A lifetime.

I’m thankful this place and people were there through Henry’s early years and to provide a jumping off point for Ezra. We met people and formed friendships and relationships we never would have otherwise. I am in a better place now to find the members of Ezra’s village he needs … and the ones I need. The ones that make me feel like a good mom and not a terrible therapist.

So I am getting back to being mom first and fighting to find the missing piece to our village. I will hug. I will kiss. I will play.

And so… there was my struggle at the time the world tilted. Our village shrank. And then it shrank some more. We shouldered more. Virtual learning. Virtual therapy. Virtual doctor appointments. But I am still their mother first no matter how the world spins. I will try to give them their PT, OT, Speech, PreK, and the rest of the bag of roles we have on our shoulders as we shelter in place for the 11th month in a row.

We have great days and breakthroughs and giggles and love. And we have terrible days of regressions and tears and meltdowns. We let the good days be good and we make the bad days better by giving our family room to just be mom and children and dropping the rest. It’s heavy some days. And that’s okay. We are still breathing and that’s all that matters. Give yourself room to let it be okay. It’s a different world now, but the lesson is the same. Find your village; virtual though it may be.