All that you deny in an Autistic adult, from the presentation of their Autism to their diagnosis itself, is what so many of you long to see in your children…so why do you expend the unnecessary amount of energy attempting to dismiss the very real …
As I sat in this clinic waiting room, my mind raced…then it wandered. There weren’t enough seats in this large waiting room. The olive colored walls clashed with the purple cloth chairs and wooden armrests. It’s walls reminded me of my bedroom in high school with all the posters and bulletin boards. The room was unevenly lit as only half of the space had fully working fluorescent lighting. The tile was an off-white that almost looked yellow in such poor lighting. Sunlight struggled to shine through the smudged and streaked windows. This space was sensory hell, and normally I would spend a considerable amount of time talking myself through coping strategies to help guide me through such an unpleasant environment, but a couple caught my eye across this large room.
Two women with similar faces were getting settled into the only remaining seat in this room. The older woman was in a wheelchair and the younger one who had her face was locking her chair into place. I remember thinking they both had such lovely skin. Deep, rich mocha with a touch of an orange undertone that really shimmered when light from the sun managed to sneak through smudge covered windows. The younger woman gently stroked the older one’s long gray hair. She wore her hair in a loose bun that sat low, just above her neck. Some hair hung freely in the front and swooped some across her forehead. I remember she had such thick hair for an older woman, it hadn’t started to thin out.
I wonder how long my hair will stay thick?
The one with the younger face then said, “mama, do you want a magazine?” “That’s her mother,” I said to myself…but out loud because I don’t do inner monologues.
Of course that’s her mother, they have the same face.
Her mother just looked at her with the kindest eyes, they reminded me of Aidan’s. She didn’t say a word, but her daughter knew she wanted a magazine. I could tell she reads her mother’s eyes. Just as I read Aidan’s. As her daughter’s boots clicked across this kind of white, kind of yellow tile floor in search of a magazine, I watched her mother. Her left hand started to tremor and she would slowly bring her right hand to comfort her left. As she held herself hand in hand, her eyes scanned the room. She didn’t look at anyone, her eyes took the same path mine did. Chairs. Walls. Lights. Tile. Windows. She then quickly looked down at her hands. The room was probably too much for her as well. Her hair came undone from moving her head around the room. Her daughter returned with a few magazines. “Mama, your hair came loose. Let me fix it for you.” She paused as if to gather herself, then said, “I am going to fix your hair, mama, it came down.” I found her announcing her actions comforting as it’s something I often do with my boys…and something my husband often does with me. I watched her as she gingerly pulled her mother’s hair back into another loose, low-hanging bun.
Does her mother like her buns low and loose? Perhaps it hurts to tie her hair too tight?
Once the daughter finishes her mother’s hair, she moves to take the seat beside her. And as she lowers herself into the chair, I see it…exhaustion lives in her bones. She takes her time sinking into these incredibly uncomfortable chairs and lets out a heavy sigh. She closes her eyes, draws air into herself, and lets it out slowly. She turns to her mother, smiles, and offers her a few magazines to choose from. I was interested in what she chose, but I hear my name in the background. I can tell they had been calling me for quite some time because I could see the irritation in the nurse’s face as I make my way towards her. I didn’t care, I was too caught up in the mother and daughter across the room.
I thought about them for days after I saw them. I see my life in theirs. I see where I currently am…and I see where I am heading. My life is like theirs in many ways…and unlike theirs in so many others. I see myself in the daughter, caring for her mother, only I care for my boys. I see myself filled with so much love and affection for my boys, but I feel so much exhaustion as well. I am tired. I am worn down. I am but one person. And I wear out.
I don’t allow myself to feel these feelings, especially not publicly, but they are there…right beneath the surface. Autism is lifelong. Society is hell for the disabled. I alone cannot change this world. No matter how hard I try. The changes I want to see occur most likely won’t occur during my lifetime, probably wont happen during my children’s either. I deny myself the permission to feel what I need to feel here. I always need to present a strong, confident, capable, loving front. But strength shouldn’t be tied with always being positive. That isn’t strength, that is denial. Everyday isn’t an easy one. For myself or my boys. Strength is allowing myself to sit in the soft parts and sort myself out. I need to be confident enough to say that “I am tired.”
I see myself in the mother, but I don’t know that my boys will be like the daughter. As I age, I will slow down, my brain will change, memories will fade, energy will wane, and I will need help. If it were up to me, I would perform at a high level forever to care for my boys, but that is not how life works. Would my boys care for me as this daughter cared for her mother? I won’t rule out my children’s capacity to do so, but I just don’t know.
I just don’t know.
And I have to be strong enough to say that.
And because I am, I know that they shouldn’t be obligated to do so, what I want for them is to live long, happy, healthy lives with a few friends. They don’t have to push me to my appointments, do my hair, or get me magazines. I just want them to live happily rich lives with some amazing people who will love and care for them just as I have their whole lives.
But I would not have reached this point in my journey if I didn’t allow myself to live in those pockets of doubt and fear (fear that I find to be rational, honestly). Now I have to worry about them finding their people, their happy, and their place in this world that is not designed for minds like theirs.
My great-grandmother had two gardens she loved. One in the backyard held all the vegetables. The one in the front was full of beautiful flowers, and a few peppers. Over the years, she let the vegetable go, it became too hard for her to keep up with and with less and less family coming over for visits, she didn’t need that much food anymore. But she still kept that flower garden up. Her roses were so beautiful. I always thought it odd that she never put any in her house. Isn’t that what you do? But she never did. “They belong outside, where they will last longer. I will water them and leave them be.” When she would get sick or was too tired to do so, my grandma or I would water her roses, and when she passed, we continued to water her roses.
Then my grandma died a year later, and it was on me to water the roses, but I no longer lived nearby. Her beautiful, probably would have won some awards, roses, are no more. They are gone because no one was there to care to them. To give them the love they deserved and to water them.
I think of my boys. What will happen when I am gone?
I think of all my life’s little roses. Who will water them when I am gone?
Last year was our first year homeschooling both boys full-time. I had been homeschooling Jojo for a couple of years full-time already, and homeschooling Aidan part-time for four years or so. That full-time dive for both of them at the same time was scary as …
I am often asked by parents how to help their child through a meltdown. I don’t often dig too deeply into matters that involve “coaching” someone through Autism signs and symptoms. The reason? That’s a post for another day. Here, in this space (this blog), however, I will open myself up more to these type of shares. And though this isn’t something that most of you require of me, I know that it’s something that a lot of you want to see more of from me.
So, strap in, get your coffee and a snack…this will be a long one.
Prior to meltdown prevention and/or management:
A few meltdowns here and there are unpleasant and scary but if your child is having a lot in a short amount of time or really severe ones, I suggest you take a pause from anything that your child is doing that is considered “extra” for your child and your family. This could be therapy or any extra-curricular activities with the school. Put those on hold for a week or two (or more). Sometimes, an improvement is made here because your child might be experiencing burnout or overwhelm. This break can bring them back to their center, but also serves as an opportunity for you to look for other triggers/causes…starting with medical.
I know for myself and my boys, we often have difficulty with communication and cannot always relay what type of pain or discomfort we are feeling. It is most definitely a chore to assess our children medically for any underlying conditions we do not know about but it’s necessary in my opinion.
Keep a behavior log. Document any changes in your child’s mood and behavior. Chart when they take any meds. Note any behaviors that may occur afterwards and how your child was prior to the medication. Keep track of all the things you and your child do throughout the day. How is their mood and behavior before, during, and after you finish an activity? Chart their food. How do they feel before, during, and after they eat?
You are writing everything down in this log. From the weather to the lighting in your home. Does your child appear more relaxed in low lighting? We have led lighting and in yellow blue red and orange. Those colors are more soothing to our eyes. We also have white light, they are led and not as bright. This helps as well. Check to see how well they do with light. See how well they can actually see visually. If your child has not yet had an eye exam, it might be time. There are developmental optometrists out there that can conduct special exams, they are hard to find and you might have to travel, but this too, is worth it. Look for GI issues. Check for seizure activity (this is common in Autistic individuals). Sometimes, doctors will look at you like you have lost your mind. Pay them no mind, let them know the communication issues your child has, and that these tests/assessments are necessary to find any underlying causes.
How is their sleep? Sleep is incredibly important and so many within this population have poor sleep. A lot of times, lack of sleep is the result of something lying beneath the surface.
Told you, this is a lot. And I am just getting started. It is a LONG process. But like I said, it’s necessary.
I hope you remember that during this time, you are taking a break. All of you. During this time you are just observing, learning, documenting, researching, and PLAYING. I LOVE play because it shows that you are engaged with them on their level and in their world. They begin to trust you more. Trust me, they really do.
This log you keep is you identifying all triggers, new and old. Doing so will help you to create an environment that is more accommodating to his needs. Also, it helps you to work on specific areas.
My meltdowns and that of my boys have decreased dramatically because we have identified triggers and any underlying causes that may bring a meltdown on.
Once it happens, it happens. And it is difficult to deal with, and scary for both parent and child. I know, we have been there so many times.
Public meltdowns. Do your best to guide your child to a safe space. This can be done more quickly if you are familiar with the space that you are in. Many people think they are familiar with a place they frequent often until they have to do what I ask of them in this next section, then they draw blanks. And that’s okay. I once didn’t know this stuff either.
So, visit any and all places that you often visit as a family (or want to visit as a family), alone. This is easier for you to make note of any areas within this public space that are good for you to retreat to should you start to see a meltdown come on. A lot of times we can tell, and there are times when we cannot. Knowing where you can “escape,” helps. So you might be familiar with your favorite department store, but do you know of all the areas you can go to keep your son safe and away from others? These would be areas tucked away from the crowd but not too boxed in. Somewhere where you can give your child the space they need but not let them out of your sight. You do this with places that you aren’t too familiar with either, if you are able. Sometimes, Hammy or myself, will do a quick walk-through of a space and jot down any areas that look ideal for us to go should a meltdown occur, then we head back to the car and help unload the kids…and go in. This isn’t ideal, but it’s better than nothing. Rule of thumb, the more time you have to research a location, the better.
While in public, if you are able to get to the safe space. You are better able to help your child through the meltdown. Lots of times you have to let them run its course, keep them safe in that space, and from harming themselves and others. This is incredibly challenging and taxing on your emotional and mental energy (and sometimes physical, if you absolutely have to hold them to keep them from hurting themselves).
Finding a safe space in your home is important as well, so make sure you have a few spots around your home that serve well for this purpose.
Okay, you’re wondering, what’s next? They are in their safe space, whether it’s at home or in public…what do you do next?
Behavior is communication. You know how you often hear this? It’s true. It will help if you look at the meltdown as a form of communication and not defiance. This will help you to see that your child is struggling. You are looking at the root of the meltdown not the meltdown itself.
Be empathetic. Listen and acknowledge their struggle. You are validating their experience. You will gently guide your child and give them the tools they need to make it through this. If I am able, I will sit down a safe distance from my child and I will listen. They don’t often use words in these instances, I listen to their screams. I listen to their hands…what are they doing with them? Are they flapping? Are they pounding into the ground? Are they just flying about? I listen to their body? Are they sitting up? Are they standing? Are they trying to run away? Everything they do has a purpose and a meaning. And over time, as you learn more about their triggers and behaviors (from your log) you will begin to know what they mean simply by what they do with their bodies.
Make them feel safe and loved. You aren’t talking your child out of a meltdown. You aren’t trying to calm them down. That’s often a waste of time. Your child isn’t hearing you. Stay as close to them as they will allow you to. Don’t scold or tell them they cannot leave any secluded space until they calm down. This makes your child feel as though they don’t deserve to be around people. Just stay as close as they will allow.
Do not punish your child. This isn’t the time for that. And it’s nonsensical. You’re punishing a child for big feelings they cannot contain, overwhelm, and sensory pain (a lot of the time meltdowns are triggered because our senses are overwhelmed by the environment that we are in). Allow them the space and freedom to let it out knowing you are there nearby to provide support.
Focus on your child, and nothing else. No one else. This is hard, especially in public, but ignore the distractions and focus on your child. He is the one that matters.
Keep a log (I recommend a different one than the mood/behavior log) that will keep track of any sensory items and toys your child gravitates towards and loves the most. Consider purchasing multiples of these items to keep in various places. Especially your car, smaller items in your purse or bag. These can include weighted items, headphones, sunglasses, fidgets, etc. During a meltdown, don’t force them on him, but have them available should they want them. These can be used prior to a meltdown occurring as they often help keep one at bay, but if they are already experiencing the meltdown, don’t offer or force these on him, just keep them nearby.
Now sometimes a meltdown can be so severe that you might have to hold him. If this is the case make sure you get some input from someone who is trained in holds.
When they are calm, this is when we teach them some coping strategies. We can work on emotional regulation. My kids love to be in nature, as do I. We take walks often among the trees. I hear yoga for kids is good too. We haven’t tried it yet, but we will. Teaching them coping strategies when they are not in a meltdown can help them when they do have one and even help stop one from occurring.
Do not wait until your child is mid-meltdown to want to work on and/or teach coping strategies. You are working on this every single day and while they are not in crisis.
When your child has started to relax you can start engaging with them again.
Speak in a calm soft voice. (I learned this one the hard way, definitely do not yell or sound angry).
Normally I speak to my children the way I speak with everyone else, but in these instances I slow my speech down because we (my boys and I) process things a bit slower when coming out of a meltdown. If your child is the same, don’t speak too much and when you do, say it slower…pause more between sentences.
This next bit of advice I read somewhere years ago and it just stuck with me.
Give your child some choices when the meltdown has passed. Offer some water. Maybe they would like to clean themselves up some. Give them options. Don’t talk about the meltdown. Definitely not now.
If the meltdown resulted in a room being trashed, make sure your child is completely out of the meltdown before they are tasked with cleaning the room. If you start to give instructions to pick up the room too soon, this might trigger another meltdown.
Reassure them that everything is okay. Your family is still the same, your life is still the same, your child is still loved, and everyone will be okay. Your child doesn’t want to feel as though they are the cause of distress in your family’s life. They don’t want to feel as though they are breaking up the family. Don’t make them feel that way, especially when you know that isn’t the case.
When the dust has settled, everything is cleaned up, and you have a moment to yourself. Make a note of the meltdown in your log (the mood/behavior one). What triggered it? What happened? Just anything you can think of.
Then take a break yourself.
I told y’all this was a long one, and I could have written a lot more. This is the result of years of doing the wrong things, years of doing the right things, and research and consultation with others on similar journeys. I hope that it helps you some.
There’s so many bodies in this space. This tiny 2bdrm rental with it’s one bathroom. It was built in the 80s and while the owners tried to impart modern features such as warm beige walls, wood blinds, and sleek light fixtures, they left the appliances and cabinets of its era. The light in its small galley kitchen is of the commercial variety. Y’know, the ones you find in the school cafeterias. The tile in the kitchen is more “peel” than “stick,” revealing what was once beneath. The original floor of this dwelling’s infancy.
The layout is dysfunctional, as I find most older homes to be. There are walls where there shouldn’t be walls but they serve a primary function to the home. Walls weren’t just walls. Here, there’s this monstrosity of a wall that makes this tiny space maze-like. It houses the water heater and small closet. I’m sure it holds the ceiling up as well.
Nothing about this place is home. It’s walls won’t hold memories. It won’t carry our history. It’s not strong enough to build a deep enough connection to do so. This place is just another stop on our way to somewhere else. We won’t leave our imprint here. It’s cold and unwelcoming. I don’t like it here. Roots won’t take hold here. This home won’t sustain life.
I’m obsessed with home and place and belonging. This isn’t just a matter of the mind, it’s physical too. I live in a cold home I do not like within a city I cannot stand to spend another day. Deliberate strangers in a city we have called home for two years. We have no desire to seed and take root here. This isn’t home.
It’s amazing how much we learn of home once we no longer live there. The farther life takes us from our initial place, the more we seem to know about home. Or the more we seem to know about what we want our home to be.
My family is from Alabama. My mother, 54 years young, was born on the “colored” side of the hospital there. My great-great grandmother had no recollection of how old she was because they didn’t provide those like her with a birth certificate. My grandmother had to estimate her grandmother’s age from Census records. Her birthday would come ‘round each year, and we wouldn’t know. My grandfather was drafted into a war to fight under a flag coveted by those who would call him “nigger” when he came home. My family fought too much in Alabama. For everything. For their lives. For their freedoms. For their humanity. Still, Alabama was home.
I’m a Texan because my great-grandfather’s journey with an Army he didn’t voluntarily sign up for led him and his family here. With my great-great grandmother at the head, we had six generations at one time here. The bulk of our family remained in Alabama. We would visit from time to time. My grandparents preferred Texas to Alabama. Texas was all I knew. They were here over four decades. As far as I was concerned, Texas was their home too. Or so I thought. As each of them passed, we made that drive down I-20 to Alabama to lay them to rest. One by one, we made that drive.
I thought for sure my grandma, my best friend, would want to be laid to rest here. Her WHOLE life was here, and most of her life was spent outside of Alabama. But…she wanted to go home. Home was Alabama. I didn’t understand. Not then. It angered me. “This is her home! She loved it here more!” I would shout within myself. But she chose to be laid to rest in Alabama. That was her wish. And choosing where one wants to return to the Earth is just as important as choosing where you want to live.
Texas was where they lived, but home was Alabama. They wanted to return to the land of their childhoods. They wanted the landscape of their youth. I could see the memories flicker in the eyes of my grandmother as she told me stories of her upbringing. Alabama was the source of great pain and terror, but it was also full of promise and possibility. Her initial sense of identity was first molded in the fields of her Alabama youth.
I have a complicated relationship with memories. They serve as placeholders for the moments of our lives. From the most minor, seemingly insignificant to the most impactful. Home is always found there. As is our being. Trauma often lives within memories, however death does not.. I find my grandparents through remembrance. I found my place through revisiting my past and using them as a guide to recommit myself to where I presently am.
I share my grandparents and their decision to return home after their passing because their deaths, one after the next, drove me deeper into wanting to find a place for myself. Not only a physical space, but a place of being, belonging. Every single trip we made down that highway to lay them to rest, angered me. I didn’t understand home though. I didn’t understand place. I didn’t understand belonging. After four-plus decades of living as Texans, Alabama was home because the memories they had of those fields sustained them.
I share their stories of racial oppression because I guess a part of me wants you to understand why I felt anger that they would want to go back there. Surely you would understand my confusion as to why this place would still be home? The answer lies in memories. Mine and theirs. Mine because they are memories of them, and theirs because it’s their memories of home that they were sharing with me. As much as my grandmother wanted to be free from the racism that plagued her everyday life, she still very much loved her beloved Alabama. I could hear both the pain and the pride in her voice as she told her stories. Her sense of self and belonging were tied to nature. The power of our natural world is strong enough to erase the racism that infects her cities and towns. At least for the time one is connected to it. Racism governed her life and nature freed her, allowing her to explore freedom.
From the time I was old enough to ask for stories until the time of my grandparents’ passing, they no longer physically lived in Alabama, but they often spoke of it as if they had never left. I didn’t think much of this at the time, I loved hearing stories, but I understand now. The longer they lived as Texans, the more Alabamian they became. The more aware they were of the fact they weren’t really from here. That’s what being away from home will do to you. Their very conscious decision to refrain from returning home changed their perceptions of Alabama. What they thought they knew of home, only became more clear when they no longer lived there. They knew they sounded different from those who were born here. They carried the accent of Alabama slaves on their tongue. And when they didn’t want to be called out for not being a native Texan, they dropped this somewhat lazy southern Black accent in favor of a more forceful Texan vernacular.
As I search my memories of my grandparents’, I learn that they never really felt Texas was home, but rather a place they just happened to live. Home and belonging isn’t tied in a geographical location. What is a home? What is a community? How do we know that we truly belong somewhere? And that is what I attempt to answer here. I share this story of my grandparents because I feel that it’s necessary background to understanding how important the overall concept of home….and community is to me. Geographically, I’m home. The overall disabled community? Sure, perhaps. But what I really want is to feel as though I belong within the community that means so much to myself and my family. The Autism Community.
Am I home? Will I ever find a home within this Autism community? This isn’t a home I would love to call home. I do not belong. I learned of the importance of my lack of placement within this community only recently. Up until then I felt as though it was normal that I couldn’t fit myself whole here. That’s to be expected when dealing with multiple identities, right? I further justified the breaks in my identity by telling myself this community was too fractured to provide safe space for any one individual let alone hold shelter for several. As it stands, I pulled myself apart to belong here and that’s an incredible, unsustainable feat. One I no longer chose to do. All of what makes me who I am deserves a home.
I stepped away from the Autism community. I needed to. I could no longer exist in this space as a piece of myself. The more removed I was, the more I began to see what I wanted in my very own community. Being on the outside afforded me the opportunity to learn more about myself. I wasn’t who others wanted me to be, or told me to be. I was me. In all my identities, loving, learning, and enjoying who I was. I know what I want. I know what I am looking for. And I cannot find home within a community that insists on advocating from a center that barely represents even a fraction of myself.
My work focuses on helping people to be more intersectional in their advocacy, but to also find a home here. My hope is that one day this will be a community worthy of all of our beautiful voices, living as openly and as freely as we choose to be. Home needn’t be a physical place. You don’t even need to understand why someone finds a home where you wouldn’t think they could, or should. I ascribed Texas as home to my grandparents and then grew angry when they went another direction.
You are responsible for yourself, no one else. Allow others the space to discover who they are and to find their place. Too many have told me it isn’t possible to have the community that I am looking to build here. My messaging will be “too convoluted.” Too “cluttered.” There’s “too much going on and we are stronger if we focus on one thing that will impact the group.”
The community we currently have is not working for me. I don’t feel comfortable here. And I don’t feel safe. I am already building what I want. I hope that through my work you will decide that you want to be here too. To be part of a community that celebrates the diversity of its members and works the hardest to help those of us who need it most.
Being Black in America is knowing you’re good enough, smart enough, capable enough…and when you’re finally recognized for it, you question if you even deserved it. America has taught us that we need to be better. That we not only have to demonstrate our worthiness, …