Advocating for your child is it’s very own unique level of Hell. The mind games alone are enough to make you walk away and not even try.
I’m trying desperately to help you understand my child and to see that he’s not deliberately trying to be difficult and defiant. While at the exact same time, I want to not lose your support, regardless of the fact that I may be challenging you to step outside of your preconceived understanding. I am desperate to not come across as a helicopter mom, trying to make my child’s life easy. I’m hoping that you “hear and see” me as an expert on my child with valid input and not as an overprotective, un-objective parent. I want recognition that I come as a well versed peer and not to be on the receiving end of some bias towards me or my child.
I view children as wanting to please, as wanting to do their best…and when their behaviour deviates from what we’ve come to expect…..I question, “What is their Behaviour Communicating to us? What are they struggling to verbalize. What are they struggling with?”
Siahs struggling at school. His behaviour is one of escaping into a safe world…..classically autistic. Rather than clamping down on the behaviour, I believe that we need to figure out what he’s struggling with. Once we can help him……he will have energy to once again rise to the level of success, we have previously seen and even surpass it.
Until this situation gets sorted out, I worry tha we are stuck in discomfort.
make (someone) feel uneasy, anxious, or embarrassed.
I dislike discomfort but I dislike my child struggling even more.
We, special needs parents do not enjoy ruffling feathers. We do not enjoy pushing the bubble. We do not enjoy messing up the status quo.
We would give just about anything to just be typical and never need to spreak with you. But we don’t have that option and so we carry on. Please don’t judge us for that.!
Judah is at school.
I’m kind of in shock.
Let me be clear, I am NOT in school at this exact moment.
I took Hot Lunch to school for Siah, as a treat. Off handedly, I asked if Jude would like to stay with Siah and he agreed. This afternoon is Art in his class or Games Group with the most amazing EA. He said he’d like to stay for Art. He was a little concerned about the 15 minutes of Daily Physical Activity but we’ve worked an arrangement for him and at this exact moment….the plan is that I will pick him and Siah up at the end of the school day.
I left the school almost scared and feeling really weird. I don’t have my little shadow with me. I was sure he was going to come tearing out of the school after me begging to come home and saying that he’s changed his mind. Nope!
I came home and wandered around, feeling a little lost. I made lunch for myself and then surveyed my kingdom. It’s in pretty rough shape. My first thought was:
“I SHOULD clean this up. I ONLY have a short window of time.”
My second thought was:
“I don’t want to.”
So, I have curled up on the couch, with my laptop, in the middle of my mess. I’ve put music on and am having a cup of tea.
I feel frantic, like I’m wasting an opportunity to “DO” things. The list of things I COULD do is way TOO LONG!
The list of things I WANT to do, is also TOO LONG.
What’s more important than DOING ALL THE THINGS, is BEING!
I probably won’t get the opportunity to do much “resting” after I do nothing…..but in doing nothing, I am resting.
I COULD DO all the things but all those things will still be there when I’m done just “BEING.”
So for today, I’m breathing deeply and holding onto this moment.
This sweet kitty came and snuggled me all on his own initiative.
I’m okay…..well, I’m not okay but I’m sure I will be and it’s not the end of the world…..I’m just tired.
Well, I don’t like that either, because I’m not “just” tired. I’m exhausted. I’m wasted. I’m trying…..
I’m trying really, REALLY hard.
I’m trying to hold myself together.
I’m trying to hold my boys toge……………
I edit myself all the time. I figure that you must be as sick of hearing “all that I have to do” as I am of thinking about it.
And yet, every time that I hit “POST” someone leaves a comment or sends me a message or tells me later, that they don’t feel alone, or they “get it” a little bit more,or that they had no idea. All of that….it brings awareness. It helps to create community. And community is especially important for our parents/caregivers within the special/high/complex needs community and that’s why I continue to write and overshare.
I know that some people look at me and think that I have it all together. Ha Ha Ha ha!
I would NEVER claim to have it all together. I am a hot mess, sometimes presented fairly nicely, with overly done make up and enough hairspray to make my 90s’ self proud. Sometimes I’m rocking the greasy hair, messy bun with yesterday’s yoga pants and baggy shirt, all rounded out with lipstick and shades…….like putting lipstick on a pig, right?
I wish I was perfect…..well, not really but I wish I had a house cleaner and maybe a nanny.
I might be a little more sane, if I had that…..but I don’t and so I do what I can and often…..always…..that’s not enough to be perfect. Mostly, it’s just not enough.
I struggle with the fact that I may be judged for my children’s inability to self-regulate like lots of kids can.
I struggle with my inability to do everything that I want to do.
I struggle with my inability to do things that I feel others think I should be able to do.
That last comment is a huge issue for me……. I tear up writing it. I tear up re-reading it. It’s where I’m stopping today……why do I place so much weight on what “people” may think of me…….
Maybe this is why I feel so strongly to advocate and champion for kids with invisible disabilities; and for understanding and compassion for all!
1 a: impaired or limited by a physical, mental, cognitive, or developmental condition
I look healthy and for the most part happy and well rounded BUT…
I am limited in my physical and mental abilities. Not cognitively, although the “brain fog” from stress and exhaustion is a real thing. I have HUGE amounts of empathy for people who have Executive Function Issues and even Brain Injury because…….I used to be extremely capable of an insane amount of organization and administration. With all the stress and trauma we’ve dealt with over the past decade (its been over a decade), everyday I walk around saying, “Why am I here and what was I going to do?” I walk around in this “fog” where I can be talking to someone, and suddenly realize that I have no idea what I was talking about…..it’s gone. That too happens, daily. Some days its better and some it’s worse.
There are things that I can’t do from an emotional energy standpoint and even from a physical energy standpoint……and its hard…..because I look like I am okay.
And every time, I have to say that “I can’t”… it feels like a punch to the stomach. I can’t do a school project with my kids. I can’t go on a field trip. I can’t run to the grocery store for a quick pick up. I can’t make that phone call. I can’t type that email. I can’t do that laundry. I can’t clean the way I want to. I can’t…….
Can you imagine? If you can’t…..call yourself extremely blessed. I don’t begrudge it of you. I used to be you. You are blessed. Please don’t take it for granted. But Please… do have compassion for those who may not be able to.
If you can imagine……know that I get it. To some degree, I get it. I get that there are things you are good at and things you wish you could do. I get that there are things you CAN make happen , but it comes at great cost and sacrifice to your (and your family’s) well being. I get that there are things you just CANNOT MAKE HAPPEN. And I get that it sucks.
If you’re struggling, know that you’re not alone. It’s hard. Know that it’s okay to have the good days and to celebrate them; and to have the bad days and to hate them. Know that a good morning can turn into a bad afternoon or vice versa; and that every day starts anew with new possibilities. Know that it’s okay to be filled up with sadness, and even to sit with it for a moment, but that you need to let it go to make room for something else. Be easy on yourself and extend grace and compassion to yourself.
Judah wondered why I was crying today and I told him that my heart felt overly full of sadness and crying was helping to pour some of the sadness out. That I was making room for other emotions to come and fill me up.
I think I’ve emptied enough sadness out and I’m going to be careful with myself over the next few days and do things to help fill me up. Tomorrow is a “Mental Health Day” for me and my littles. I’m looking forward to it.
I cannot be happy enough to see 2017 close it’s doors.
I had thoughts that this year would look so much different. And while this year and its events have kicked my butt…..there were good things about it, I’m pretty sure.
I can’t think of too many at the moment, because of the severe brain fog due to mental exhaustion and stress.
Between the spring and the issues surrounding Jeremy and the High School; between the summer and all the fighting between my boys; between this fall and finding out that my baby has perceived trauma due to being a sibling of autistic brothers, to school refusal, complete out-of-your-senses panic, and therapy……lots of therapy; between helping one child feel safe within his school and with his teachers to advocating that they see the person and his strengths and not get sidelined by the “side effects” of his disability; from moving my babies into their own home; and doing so much more with my own creative endeavours, than I ever thought possible……..it’s been too much.
Many things and many people have been set aside as I try to survive. There is no thought of thriving and I’m eternally grateful for the opportunity to escape into art and creativity……because that small part of my life means that I’m not lost.
I’m not lost to chaos.
I’m not lost to meltdowns.
I’m not lost to advocating.
I’m not lost to lack of knowledge or understanding.
I’m not lost to special needs or trauma.
I’m still me.
I am exhausted.
I am barely treading water.
I am in a tough space.
I like to say that seasons change and I know they do. I believe that I have more strength than I realize. I believe that I am capable of handling a whole lot……I know this, because I’ve had to.
And yet, I’ve never been more closer to giving up.
I’ve NEVER been this weary.
I’ve never wanted this badly to run away from everything and everyone and never be found again.
My sense of responsibility has been taken to the end of itself.
To. The. End.
Physically, I’m tense, like muscles in knots, headaches and migraine, tense. I can’t sleep. I’m exhausted. I can’t focus. I have to write lists to accomplish anything. And even then, I stare at my list with a blank sense of uncomprehension. I see people doing human things. Regular things, like going for coffee or a walk or popping out to the store to pick something up…..and I can’t even fathom how that’s a possibility for them. It’s Herculean effort to exist.
Do you understand?
Can you even comprehend?
I share because I know I’m not alone. I know there are others out there who feel like this and blindly and stumbling keep putting one foot in front of the other, not knowing how but knowing they have to. Doing everything in their power to reserve the strength that they don’t have while pretending, as best the can, to deceive themselves into carrying on because there is no other choice.
I am walking away.
I’m taking my crazy with me and we are all running away. We will put our toes in the sand. Pray for sleep and regulation. And hope that we can recharge in the sunshine and the water.
But there are many, like me, done. Tired. Exhausted. Worn out.
Look for them.
Love on them.
Let them know you see them.
Let them know you love them regardless of their ability to give back.
Let them know in a tangible way, that you see them – that you care.
Some ideas: (in no particular order)
– Take a meal
– Give a Gift Certificate
– Drop off a coffee and donut
– or a bottle of wine
– take a kid out for a treat
– clean a bathroom
– clean out their vehicle
– give flowers
– offer to watch kids
– do a 10 minute tidy
– ask how they are doing, really listen and be okay with a hard reply
– connect and say hi (by text or email) and don’t expect a reply
– send a card to say you’re thinking of them
– learn about what they are dealing with (autism,ABI, ADHD, TBI,
DS, FASD, trauma, divorce, addiction, mental health, cancer, grief, etc)
There are so many ways to connect without putting more pressure on ones who are already tapped so far beyond what’s emotionally possible.
This holiday season, I’d love to challenge you to “see” someone, to hold their challenges with respect and reverence, and to be a support in ways that are meaningful to them.
It may mean being okay with the messiness (emotional, mental, physical and/or spiritual) that often accompanies our lives.
This year has been an extremely tough one for our family.
I’ve been a parent in the School System for 15 years, and was a student, myself, for 13 years (K-12).
I had no issues. I found school to be easy….probably too easy. I definitely didn’t try hard enough and still got mostly great marks. Sure, I re-did Math 10 (3rd times the charm, right?) but I didn’t care one bit about sin/cos/tan or graphing. Never have used it.
I believe that over the past 11 years, my sons (and I) have been repeatedly traumatized by the School System.
I understand that is a weighty sentence, but I fully believe it to be true.
Trauma is described as a deeply disturbing or distressing experience. It doesn’t have to be a death or violent event for someone to perceive a situation as traumatic.
Occurs within the child’s primary caregiving system and/or social environment
Typically, complex trauma exposure involves the simultaneous or sequential occurrence of child maltreatment and may include psychological maltreatment, neglect, physical and sexual abuse, and witnessing domestic violence.
Exposure to these initial traumatic experiences, the resulting emotional dysregulation, and the loss of safety, direction, and the ability to detect or respond to danger cues may impact a child’s development over time and can lead to subsequent or repeated trauma exposure in adolescence and adulthood without supports that might buffer the negative effects.
I have two sons that have experienced repeated distressing and disturbing experiences within the school system. They both have a diagnoses of Autism Spectrum Disorder, Anxiety, ADHD and Learning Disabilities.
Cognitively, one son is average and the other is superior…..that also brings in another layer of complexity.
We have fought on behalf of our boys, for the last 11 years.
There has been misunderstanding of their specific disabilities and needs.
There has been mistreatment by well meaning but un-informed teachers.
There has been GROSS misjudgment of stress behaviors.
There has been repeated segregation, alone, in medical rooms.
There has been denial of child specific supports as defined by diagnosis.
There has been brutal bullying with no consequences for the bullies.
There has been denial of access to opportunities because of disability, with no support.
There has been repeated emotional and mental trauma which has also resulted in physical strain on both of my boys.
It doesn’t stop there.
What affects my boys, effects our entire family. Our family of 7 is precariously balanced on the best of days….Neuro-Diversity, and Mental Health are tough loads to carry. Throw in any mental and emotional upheaval and there is no balance….we come crashing down.
My boys are resilient in the fact that, they get up every morning full of anxiety for what the day will accost them with. Every social interaction is fraught with anxiety; and requires that they must decode idioms, expressions and body language. This “social language”, that we take for granted, is foreign to them; and they struggle with learning it. Not because they don’t try or want to understand, but because they have a neurological difference that makes it difficult to do so.
EVERY DAY is filled with stress…..with anxiety……with sensory overload.
They don’t get a break from it.
And yet they carry on.
My boys keep walking into your schools EVERY DAY knowing that at some point they will be mentally, emotionally, or sensorily assaulted. Maybe not on purpose, but it happens just the same….
If I slam your hand in a car door by accident and then apologize, does it make your fingers any less broken or painful? No, the trauma is still there. Imagine how you would feel, if people repeatedly slammed your fingers in doors.
But everyday, my boys continue to enter your doors, and try again……it’s insanity, really. And I feel like I’m perpetuating the insanity….the trauma…. by encouraging them to continue to “go and trust”.
They are so very tired.
And I am so very tired!
I am tired of holding them when they come home crying because someone misunderstood their diagnosis and their heart.
I am tired of fighting every year to say the same thing and not being heard.
I am so very tired of being seen as someone causing conflict or someone on the “other side”.
I am exhausted from scraping up a weeping child who has been judged incorrectly as defiant or non-compliant.
I am exhausted from dealing with meltdowns as a result of pressures placed on them at school, to live up to “typical” standards.
I am so very weary of encouraging my children to go back to their teachers and EA’s to work “issues” out, when I believe that my child is being hurt (however unintentional) as a result of lack of knowledge and understanding.
I am angry that I have been fighting for 11 years for people to “see” my children….to see beyond the the stress behaviors and see their heart.
I am so exhausted and traumatized from the past 11 years, that I cannot even fathom continuing to advocate for my children. I cringe at the very thought of connecting with the schools to advocate on behalf of my boys and yet….. I must advocate for them because I am SO concerned for their mental and emotional well being, in regards to their care and treatment within the school system.
Dear School System,
How can we change this?
How can we affect change within our school system, so that children like mine are not traumatized on a daily basis?
How can we affect change within our school system, so that children like mine are recognized for the value they bring?
How can we affect change within our school system, sooner rather than later?
Do our children have the right to access a place where they can be encouraged to love to learn?
Do our children have the right to have the same opportunities as their “typical” peers?
Do our children have the right to access safe places, mentally, emotionally and physically, to learn and grow?
Right now, this is not the case….my children (and many others) are not being taught, trained and encouraged in safe and meaningful ways, within the School System!
How can we fix this? How can we work together to accomplish this?
ps. It is not my intent to disparage any specific teachers that my sons have or have had. I feel very strongly about the brokenness of the School system, specifically in regards to special needs children. I feel that there is a HUGE lack of knowledge, in regards to working with children that are Neuro-Diverse. I believe that there are a lot of teachers and staff are that are well-intentioned but unfortunately, unknowledgable regarding neuro-diversities.
There is a WEALTH of information available. I’d strongly suggest Stuart Shanker’s Self Reg as a great starting point….not only to aid with Students but also with Teachers and all School System Staff, in dealing with their own stresses.
I’m sitting in my living room, looking wistfully out the window, knowing that I’ve already spent my fair share of time outdoors, today.
I don’t want a sunburn and while I slather up when necessary…..I’ve never really liked the feeling of lotion on my body. So I opt for some indoor time….at least until I need to pick up the boys from school and then I’ll greet the sun with smiles and a spritz of sunscreen. Until then, I close my eyes and reminisce of the golden warmth soaking into my soul, revitalizing me.
When I open my eyes, I see evidence that Judah’s been here.
The dregs of his Honey Nut Cheerios and Almond Milk make me smile. This boy of mine is such a gift. He is an incredible living paradox. Verging on the edge of violence in his stance against injustice…….and yet indiscriminate in his compassion. Have I told you about the time we took the boys to see Guardians of the Galaxy Vol. 2 and he cried when Ego was destroyed. He clasped my hands to his heart and whispered through his tears, “But WHY? Everyone deserves another chance?”
I don’t ever want him to lose that heart for others. I will fiercely protect and nurture that empathy, tenderness, and humanity with all my being. He is such a gift to me, to us…..to the world.
I look over to my right and see glorious creativity within the chaos of these walls. That stack of mail will become “creations” before it hits the recycling bin. I savour the moments when I can sit, drink my coffee and knit a few rows on a dishcloth. I like small projects because I can finish them in between all the glorious distraction. More often than not, that coffee grows cold and my knitting is interrupted but it’s ok because these moments don’t last.
The screams to break up a fight or get a snack for someone……they are becoming fewer. The yelling because there is no toilet paper on the roll and no one thought to look in the cupboard…….or because someone ate someone else’s ice cream. It’s still there but I’m less needed than I used to be. Which is good cause there’s still a whole lot of needy people in the family and I’ll take whatever reprieve I can get.
Moose – aptly renamed – as he’s not the smartest cat in the world……but he’s exactly what we needed. He gives his love freely and unabashedly. He allows for over excitable autistic hugs and purrs louder than I’ve ever heard from a cat. It’s like audible Valium to soothe our souls from whatever anguish and trauma we may be experiencing.
I need to pick the kids up. To leave this cocoon of quiet chaos. I don’t want to.
We have an appointment on Wednesday to go and talk with someone at the School Board about this most recent incident with Jeremy.
I haven’t overshared about this situation for a number of reasons.
I’m utterly exhausted and traumatized by it all.
It requires immense energy to barely hold together a sweet boy who has been traumatized by it all.
I alternate between anger, apathy and anguish on an hourly basis.
It’s almost surreal to me except that it altogether , too real.
This is a culmination of years of educationally based trauma for Jeremy and us.
My brain keeps hurling words, thoughts and feelings at me and this is my attempt to capture some of those words and make sense of them all so that we can share consisely on Wednesday.
At the very Center of all of this is Jeremy.
My sweet boy. He struggles immensely as a young boy and that was the one thing that he ALWAYS had going for him. He was SO sweet and charming. Couldn’t focus if his life depended on it. Couldn’t read or write. Couldn’t decode social situations…..but he was absolutely darling. That was probably his biggest saving grace.
For all of his struggles, Jeremy has been desperate to connect…..desperate for relationship. He hasn’t been very good at it and when he was finally diagnosed at 13 years old, during his second attempt at an assessment, with Autism…..so many things made sense.
I find it interesting and so very incredibly frustrating that the older he gets, the less patience, support and care, people seem willing to offer. It’s like they expect him to have “gotten” it (whatever “it” is) and are more likely to judge that he’s just not trying hard enough.
Let’s break it down extremely succinctly:
On a daily basis, with NO RELIEF, Jeremy deals with:
A huge discrepancy between his academic abilities and his output (Learning Disabilities)
That’s a HUGE load to be carrying…..and he’s been carrying it for 16 years. Its an incredible testament to his resiliency that he keeps trying every day. That he gets up and in spite of his worries, in spite of inaccurate and hurtful judgments, in spite of constant internal and external pressures…he gets dressed, packs his bag, says “bye mom, I love you!” and heads off to school.
On an aside, Jeremy has been looking for a job. He’s handed out a lot of resumes, but between a “special needs label” and a service dog….his job hunt hasn’t been very successful. We’ve heard SO many positive comments about how Polite and Courteous he is. How he is SO respectful and seems incredibly keen to work…..but nothing has translated to actual employment.
This past week, in the middle of this chaos, Jeremy got a job. He got a job because someone gave him an opportunity to show them what he is capable of. The feedback we got, was that he is probably the hardest working person they’ve had.
THAT……….THAT is who my son is. He IS hardworking. He IS responsible. He IS respectful. He is DESPERATE to please and to succeed. He WANTS to do his best……not just for you, but because working hard, being respectful, and doing your best are characteristics that we have consistently and tirelessly impressed upon him as critically important to his very being.
Down to his very soul, to the core of who he is…….Jeremy is desperate for connection….for relationship.
If you were to ask me what he wants most in this world…I would say that relationship trumps everything.
If you were to ask me what he struggles the most with….I would also say relationships.
This is where his disability comes into play…..
Would you get angry or frustrated if a person who was missing a limb couldn’t climb a ladder as fast or as nimbly as someone with complete functioning limbs?
Would you be short tempered with someone who had a cleft palate or was in a wheelchair?
Now I realize that every disability has people who are cruel/uncaring and judgmental…..but that’s not what I’m referencing here.
How about someone who is blind…….but you didn’t realize they were blind? You may be frustrated that they weren’t as fast and nimble at everything but as soon as you realize they are “differently abled”……more often than not, we have an “AHA!” moment and our compassion increases.
How often do we see a child having a temper tantrum in a public place and judge?
Or is our first thought, “oh I wonder what’s stressed that sweet little one to their breaking point?”
How often do we hear that a child in our child’s classroom “freaked out” and they had to clear the room; and judge that that kid is spoiled and gets away with too much?
Or is our first thought, “what perfect storm of physical/mental or emotional triggers overwhelmed him till all of his energy and ability to “hold himself together” was depleted?
Do we judge the behaviours or see the behaviours as communication?
It doesn’t matter who you read, Stuart Shanker, Ross Greene, Gordon Neufeld, Gabor Mate, Brene Brown or countless others……..CONNECTION is CRITICAL!
We crave connection and acceptance on a very deep level. Disconnection and rejection have a HUGE impact on humankind. Without connection, we are more easily succumbed to addiction, depression, self harm, etc. It’s hard to find the strength to carry on when we are alone. But when we know that we have the love and acceptance of those who care for us……..amazing things happen. We can shine and grow. We can reach and exceed our expected potential.
How many inspirational stories do you hear and read about where “someone believed in me so I believed in myself and accomplished great things? What’s at the core of those stories????? Connection. We are hard wired for connection.
Will you look for moments to connect, this week? Especially with someone who is struggling to connect. Reframe “behaviours” from “a terrible child” to a struggling child and ask Why they are feeling and acting this way and what is instigating the behaviours.
To see our children as struggling and not as defiant or problematic is the start of an incredible journey towards connection that will benefit you and I and the world..
I stumbled around my house today, ever so grateful that I had no appointments and nothing scheduled to do.
There is always cleaning and tidying. Household chores that are mind numbing and can be done on auto-pilot; yet… never ending.
I threw some laundry in and loaded the dishwasher. Swept haphazardly and relocated some toys.
But mostly I sat…….
I’m, constantly, on the verge of tears; thoughts racing through the corridors of my mind. Simple tasks are too difficult to execute. I should be able to make a nail appointment. I was even there in the shopping mall. But I couldn’t…..it requires more energy than I have. How lame is that?
I can hear the words I need to say and know that my day is free tomorrow and the next, but…..”asking for something” is too much. Even if it’s just an appointment that I’ll be paying for.
I waste energy, questioning why I can’t do this…..energy that I don’t have to spare….am I scared they will be too busy (rejection)? Is it just the social interaction (introvert, much)? Am I just useless (negative self talk)? I dismiss that last thought as garbage but it still bothers me that the thought is there in the first place.
I look at the clock and realize that it’s almost time to pick up the kids. I’m praying that today’s been a smooth day and that no one will be too disregulated even though that prayer feels futile.
Jer called me twice and Jon twice on his walk to school this morning. The fact that he went, speaks to his resilience in the midst of this storm. But guaranteed it’s been a day spent on high alert and he’ll be exhausted when he comes home.
Siah should have gone swimming with his class today but didn’t. I’m not sure how much of it is anxiety and how much is autism. He loves swimming and water….so something’s up……
Judah went to school today, only because I let him have a mental health day yesterday and told him that the pay off was that he went for the rest of the week with no whining. He did whine this morning but went anyway.
I just want to run away. I’m definitely feeling the flight aspect of the “fight/flight/freeze” scenario but that’s not an option that I have the luxury of holding onto.
This week has been a tough one. One of my boys has been discriminated against because of a lack of understanding of who he is, what his struggles are and what supports he needs.
I’ve been trying to wrap my brain around what I’ve been feeling this week. This situation could have been avoided had there been more understanding, more inclusion, more compassion, more knowledge, and less selfishness.
If people had taken the time, energy and effort to know my son…..to really know him……they would not have treated him the way that they did.
If they had looked for and discovered his heart and soul….they would not have judged his struggles as defiance or disobedience.
If they had looked for, and discovered his abilities….then his disabilities would have been overshadowed.
If they had looked for and recognized his intense desire for relationship and connection…….they would have been able to see beyond the anxiety and disregulation.
I keep coming back to this idea of “knowing” and of “being known”. I believe there is a desire in all of us to really, truly be known. Maybe that thought terrifies us….maybe it excite us…..
I believe that our biggest fear in being truly seen and known, is the fear of being rejected……of not being accepted. That’s what we, all, want…isn’t it? To be known and to be loved, exactly for who we are. I’m not saying that we should never grow or work on areas of weakness. Growth and Personal Healing are critical, but being loved and accepted for who you are is so important.
I know that this is one of my deepest desires and yet, if I’m completely honest……I’m terrified that if you truly knew me, that you’d reject me.
I don’t know why I think that.
I don’t think I’m a bad person. I try to be authentic, open, and honest. If you only know me online, I believe that I’m the same person in real life. I can be funny. I can be serious. I try to live with compassion and not judge. I want to exemplify love in my words and my actions. I don’t shy away from the truth, nor do I want to hurt people with it. I share about the good and the bad. I speak with way too many exclamation marks and periods……..just like I type!!! I find it difficult to speak without my hands, without using facial expressions, and my whole body.
I often feel like I’m too “big”…….too “expressive”…….too “expansive”……
I feel like I’m constantly diminishing my true self because my true self is overwhelming.
I LONG for connection and yet, I’m terrified of it.
And maybe this is why I feel SO strongly for my children…….I see their intense desire for connection. I see their yearning for relationship. I see their hunger to be known………and accepted……and cherished.
And yet, they are big……their personalities can be larger than life. They can be overwhelming at times. But I SEE them……I KNOW THEM!
I see their hearts.
I see their souls.
I see their goodness.
I see their kindness.
I see their compassion.
I see their innocence.
I see their love.
I see their passion.
I see their zeal.
I KNOW THEM.
And yet, they’ve been hurt….too many times!
They’ve been hurt because people didn’t, couldn’t or wouldn’t look beyond the struggles and disabilities to see them…..to truly KNOW them.
It hurts them.
It hurts me.
I believe that we miss out on some of the most precious treasures in the world, if we dismiss those who may be differently abled.
Maybe in really, truly seeing and accepting others; we too, will be seen and accepted………..what would our world look like then?
Can you imagine waking up in a remote village on an island somewhere? It’s a beautiful place filled with people very similar to yourself in looks. So, it’s not like you stand out as different.
But there are differences…..you don’t really seem to speak the same language as everybody else and you don’t really understand the customs or the social rules of the community. You want to fit in. You want to make friends. You are so lonely but no one seems to understand or accept you in the same way that they understand and accept each other.
You try really hard to communicate, but the harder you try to connect with the people, the more they seem to misunderstand you. They start to talk to each other, about you. Many of the attempts that you make, to connect and communicate, seem to highlight your differences and exacerbate misunderstandings.
Over time, your anxiety about being able to connect grows, which only increases your difficulties in interacting. Eventually, over time, you learn a few phrases, and a few of the customs…..but it’s really not 100% clear to you; and more often than not, the people are confused and/or offended by your attempts at relationship. Even worse, sometimes they mock and ridicule you.
Can you………no, WILL YOU…..?
Will you imagine if this was your reality for your entire life?
Will you imagine how lonely you would feel?
Will you imagine how desperate you would feel……….
Can you imagine not understanding the social rules of the world?
Can you imagine not being able to read body language or facial expressions?