Find Your Tribe

A few weeks ago, I posted a blog about exactly what to do after you have learned of your child’s diagnosis, you can find that post here. Its a bit overwhelming and once you pull yourself out from behind the curtain of sleep deprivation and emotional exhaustion you need to do something very important. Find Your Tribe.

At first, your friends and family will be there. Emphatically. Supporting you. Hanging on your every word and asking how they can be there for you. You may have friends that will want to help, give you a bit of respite, but in time, autism will be a big part of your life. It will envelope who you were. It will change you in ways you never expected and while those friends and family members will stand by, unless they too are living it, they won’t completely understand. Ever.

You have entered a secret world where you and your family will experience things you only read about. You may be in shock you are living this life and putting your feelings into words may be overwhelming. In fact, parts of this secret world, you may be embarrassed to share. This is your new normal. Your once busy, bustling family will still be just as busy but in between your typical children’s sports and lessons you will be headed to occupational therapy, speech and even physical therapy. The home that kids once ran through all summer long, where children rushed in for lemonade and cookies will now be different. Children may not show up as often and perhaps you will fear inviting them over.

Reality is, those first friends you had, before the diagnosis will be there. They will listen, some will even try their best to learn pouring over books, texting and reminding you you are not alone but be careful because they may tire over the number of conversations about therapy or school or your expectations not being met. They may not understand the moment of celebration that your child is finally sleeping through the night, at 7, that your child had a reciprocal conversation at 9 or perhaps your child stopped being so aggressive and began using their words. Its not that they don’t care or want to care, they aren’t card carrying members of Mothers like us.

Sometimes, they feel guilty. Most know their lives are different. Some may even feel badly for you and not know what to say. They are still your friends, but once your eyes are dry from crying, you have found your voice to advocate and you are no longer standing on shaky ground, find your tribe.

For me, its happened. I found a group of moms living life with autism. We have one single thing that bonds us and the conversation about elopement receives nods of understanding, the tears of aggression receive words of comfort and the celebration of an experience in a typical situation is met with a joy only a mother who has spent countless hours sitting through therapies, doctors visits, titration of medication would understand. Not only does it feel good, it will help me not to burden my friends and family walking a more traditional journey to hit the F-U button when I call for fear of my lamenting the struggles of the day.

Last night on a whim, I decided it was time. To speak, so as I jumped on a call with a group of women, I spoke candidly about our journey. As the comments popped up in the chat box, others understood. They too lived this life. One even said I was speaking her language- I think its the “exhausted, overwhelmed, autism mom speak that I spewed a mile a minute in case my daughter woke up” language that is just now being put into Miriam Webster Dictionary. This world we live in sprinkled with autism isn’t bad but its one that can be heavy. Each of us is learning constantly and without a tribe, its an incredibly lonely place. While I talked long after my bedtime I felt at peace. Today, when I woke up, I was rejuvenated. I felt more alive than I have felt in months and it felt good. If you have yet to find your tribe, let me know, I’ll direct you and you can join me there and feel whole again.

Could You Be An Angel?

I know you see me, trying to look put together while I enter into a place of worship with a brood of ducklings following behind. I am sure you see me gently guiding my child, by hand and shoulder, prompting her to genuflect, to stand, to sit and kneel.

Perhaps you have been an onlooker watching as she talks or colors or refuses to kneel. Perhaps you wonder why this child, seemingly “normal” and well into the age where behaviors at church should be gone still has a bag, or a treat now and again to keep her quiet in the pew. Perhaps you wish we weren’t there, our big family. I know, its hard. Its easy to see a child who has visible needs and feel compassion and empathy but with a silent disability, one that is unseen, so often we jump to judgement.

Its hard not to judge. I don’t fault the judgement. Looking at our family walking into church, it appears we have it together-well, most days. A mother, a father and five kids, all together at Mass weekly. I want you to know I don’t judge you for judging my daughter because truth is, I have been you. Before I wore the shoes I do, I looked, perhaps glared when my time at Church was interrupted by what I deemed as poor behavior. Perhaps I judged when your child had an iPad and ear phones, at church. Maybe I questioned why your child, who seemed far too old sat with a drink or even worse, a snack.

I’ll admit it. I didn’t get it and armed with what I know now I wish I could go back, to say I was sorry for the stares and the glares but now, standing on the other side I realize often judgement comes from what we do not understand.

For our family, even on difficult days, we want to bring our children to our faith. Being present in front of our Heavenly Father, as a family once a week holds this family together and when he’s absent, his absence is seen in our actions within our entire family.

Today though, today, this church service was different. I could tell you the times we have been asked to leave or the times when we’ve been glared and stared at but today, today something happened that shook me to the core.

Inside her world, she knows what she wants and what she needs. It is my job to learn to understand how to help her be her best self.

A stranger was kind.

Simple as that statement is, what she did for me today meant more than she could ever imagine. Today, unbeknownst to me, I grabbed the wrong bag of markers on the way into church. As my daughter felt overwhelmed she escalated and the quiet Parish that was prayerful and reverent resonated with shouts and frustration, I tried to coax my daughter out of the pew to leave with as little disturbance as possible but it felt as if all eyes and ears fell on her. I felt as small as one could and my steady breathing was all I had to focus on to get out as fast as possible- without my own crying.

As we walked out I averted my eyes from others and I prayed.

Then it happened, from behind my car, an angel. You see, angels live here on earth and we each have the opportunity to be this angel to another. I didn’t know this woman but as she came around the back of the car I was flustered trying to identify exactly what my child needed. Her words were simple.

“Can I help?” she asked.

Never has a stranger done this for me. Sure, I’ve had friends do it. In fact I’d be remiss if I didn’t share that a friend followed this woman shortly after reminding me I am not alone and that she too was here for me. Today I was shook.

The woman, this stranger went on to talk to my daughter. To engage her and while I expected her to escalate again, her calm voice was a gift and her presence calmed my once distraught child. When I finally figured it out and had exactly what my daughter needed, we returned to Mass, together. To celebrate.

I had a lot to celebrate as I ushered my now calm daughter into the cry room. I had support. I felt love and as I listened to our Priests homily, he preached on that topic, LOVE. It was as if his writing was prepared for exactly what happened today. Perhaps he did it on the fly, not prepared for what my daughter would bring to mass but able to regroup and give to our community what was needed. Perhaps it was planned and was no coincidence and instead of judgement people left mass with empathy. I was reminded today its easy to say we love one but another thing entirely to act on it.

Today, more than any other moment in my Faith Journey with Autism, I saw God. In this woman, this angel who chose to be Jesus to me in a difficult moment.

Perhaps I don’t go to your church or maybe you have been the “me” I was before this journey. I am fairly certain if I’m not there, someone walking my journey is. I get it. Its uncomfortable to watch as a child behaves in an unexpected way but if you just take a deep breath and remind yourself why you are there, perhaps you may have the opportunity to show love to your neighbor, to be their angel. To show Jesus’ face and I guarantee, your gesture will not be forgotten.

Imagine.

Like a flower, sometimes children take more time to bloom. They may not look like you anticipated but if you take a moment, you will find the beauty in each individual child.

Imagine. Being told, your child, the one you birthed was slipping, into an abyss and changing. That she would need countless hours of therapy that your insurance wouldn’t cover–initially and you spent countless hours fighting for her.

Imagine. Fearing that gap from 3-5 would be lost. The time when you can work diligently and get so much back because you don’t have the therapies you need. So you go get trained to be a therapist because, you want so much to give your child her best chance.

Imagine. Your school district, the people who were supposed to be who the insurance said they were, didn’t have the program so you fought. You asked for certifications for paras, you requested a full time behaviorist and even more, a full day Autism program and they implemented it but still, you worried.

Imagine. Finally getting insurance coverage only to find out nearly no one in your area accepted it and you weren’t J Wow and couldn’t afford the therapists without support and so you went to work again. Finding therapy companies and starting and then being told they couldn’t continue or that they didn’t think your child was safe to be in public.

Imagine. Being told your child was restrained 58 times in one school year and another 39 the next when the year ended due to a pandemic and you now worked full time, you had a child who needed support and the only support, school was virtual.

Imagine. The first month of the pandemic, your child broke her collar bone and shaved her head because she had no understanding of danger and so you worked diligently with her team, remotely and finally decided to bring medicine on board.

Imagine. Giving a child medicine, waiting. Praying. Hoping. At the same time finding a therapy company. Hoping some more and wanting the behaviors to change.

Imagine. The therapy company comes in. The first therapist quits. The second you wait on pins and needles wondering if she’d leave you, too?

Imagine. She’s a unicorn. The medicine is working. You see your child becoming who you once remember her being. You hear her laughter. You recognize her awareness of herself, her surroundings and then you realize the people who knew her before don’t know who she is now.

Imagine. Trying to get others to recognize her growth. To see who she is now, not who she was before medication, before her new unicorn therapist.

Imagine. Hearing your child excited for her “friends” on Teams.

Imagine. Your child being judged on behaviors and her daily work while other kids have similar behaviors but are accepted no questions asked.

Imagine. Countless hours sobbing because people aren’t “kind” like the mottos say and they don’t see children for who they are and so you spend ALL your life fighting for what your child deserves.

Imagine. No, don’t. Its a nightmare and its the one parents of children who are differently abled live every day.

So instead of imagining, put yourself in their shoes. Try to feel their pain. Understand their smiling eyes are doing so because if they stop smiling they will feel what they have become numb to because this is life as a Special Education Parent.