Last week was a tough one as we had an extra bonus amount of work to “fit in” to our regularly busy schedule, with elections printing (Thanks Snap Election!)
Siah woke up with a cold on the FIRST DAY OF SCHOOL and was SO DISAPPOINTED. When I asked Jude what we were going to start our school year with, I was pleasantly surprised to have him say he’d like to start with Algebra.
We did not do as much as I had planned in my fairy tale dream world of perfectionist homeschooling; but we did get some done and for a child with PDA, I figure that’s pretty freaking good. Considering that I was busy working 14 hour days all last week.
As this week starts, Siah is still home with a cough but on the mend. Xani’s covid test came back negative – as we breathe a sigh of relief and curse whatever virus has invaded our home.
Jude’s School Day Reporting
I stayed home, today, and we actually worked through some school work with hardly any fussing. We are still acclimating to “school” and are easing into things. We managed to hit Math, Reading and Comprehension, novel studies, PE and our Conflict Resolution and Peaceful Communication Course. All in all a good day.
I recently received an email that sent me into an absolute tailspin.
I’ve just realized that with all the info blacked out, this email could be for any one of them, because all 3 of my boys have the same initials. All 3 have IEP’s and “school teams”.
Do you see anything wrong or even remotely threatening or negative about this email?
Nope! Neither do I and I asked for a meeting. Regardless, as I lay in bed, my heart started to race and the thoughts in my head sped out of control.?
What if they are upset with my child? What if they are upset with me? What if they are going to tell me that it’s too much effort to support my child? What if they chalk his issues up to bad parenting instead of trauma? What if they judge me? What if they are tired of trying? What if they put it all back on me to solve and fix?
And the thoughts spiral out of control until I’m choking back the tears and barely holding myself together.?
{I know that these are “what if’s….” and I really don’t want to live in the world of “what if’s….” because….what if it all goes amazingly well? And really what does it matter if someone thinks poorly of my child. I know the truth. But truth doesn’t always vanquish the trauma…..at least not right away.}
This is Parenting PTSD, the Educational version.In the past, I’ve had administrators and teachers say those things about my child. I’ve heard those things said to me, said about my child, and said when it was presumed that I wasn’t listening. To hear those things, destroys a piece of your heart, mind and soul. It breaks your ability to trust, to really even hear at all, let alone with an open heart and soul.
It is devastating to hear that people feel your child is too difficult, too much effort, or just not worth the effort.
While I know that currently, we have people on our teams who actually care for my boys, that past wounding, that TRAUMA is still there. It’s runs deep and it excruciatingly painful.
As a parent of a child with extra needs, you are already soul crushingly weary but usually with no real option or opportunity to rest. You are almost always in fight or flight mode. If for some blessed reason you aren’t there, it only takes one second to be activated …..sometimes when it’s not even necessary.
I’m extra exhausted right now and pretty close to the edge of tears, most of the time.
I’m not alone in this, either. There are thousands of parents, with kids who have challenges, who feel traumatized from dealing with the people within the education system.
We are desperate for people to truly see our children for the wonders that they are. We are desperate for someone to share all the good and amazing things that they see about our children. We are desperate for people to look beyond the challenging behaviour, to see what our children are saying, to listen and really hear their hearts. To champion them into becoming all they they can be and even more.
We are desperate for people to see our children as human beings; and as valuable, worthy and important as the typical kids.
On our end, it takes the courage of showing up and being there even when you don’t know if it will make a difference or if you’ll get hurt again. It takes vulnerability to share your hurts, your ideas, your successes and your failures.
If you work within the education system, know that you have parents and children who are incredibly triggered right now.
show love, show compassion, show mercy, show grace, show acceptance.
Invest in relationship. Foster communication. Build trust. Be Respectful. Be a life line.
And the benefits will be innumerable.
But recognize that there is Trauma and it’s not going anywhere soon.
Ya’ll I’m exhausted. It’s been a week FILLED with one thing after another after another and while none of those individual things are critical, the combined weight is enough to drag me under.
So today, I’m going to share a post that I read yesterday. I think awareness is so important. You can’t truly understand something, unless you’ve lived or experienced it.
BUT……you can learn. You can try to understand. You can lay personal bias and judgment aside and really seek to understand.
Jon and I have said for YEARS, that our kids have the capability to be wildly successful in life but that they would totally benefit and need a Pepper Potts to administrate things for them.
Those of us without Executive Function Deficits can often organize and structure our own lives. We can juggle all the balls, even the boring ones. But for those of us who have reduced Executive Function, certain tasks can seem insurmountable.
It doesn’t mean that people with Executive Function Deficits are stupid. They may be “Different, but they are not Less“. I will harp on that until the end of time. It’s so important. We all have strengths and challenges. It’s a part of being human. we should never belittle others for their challenges……EVER!
Lets start Autism Awareness, Acceptance and Appreciation Month with a video from my sweet boy, Siah. It’s always best to let the experts talk about what they know best. Some of this is very broad and general information regaarding autism and some is very specific to Josiah.
This was a Speech that Siah shared with his school for Speechfest one year. He did such a fabulous job and was so well received by our school community.
Every incredible person with Autism is unique and wonderful, just like you and me. We all have strengths and things that we can work on. We all have interests and dislikes. We all desire love, acceptance, respect; basically, to be treated like human beings.
In our family, we are very open about who we are, the challenges we face and the strengths we have. We are different, but not less.
What are YOUR Superpowers?
I believe that mine include compassion, kindness and understanding.
We had an appointment today regarding one of our kids. This is not our first time having an appointment like this but I don’t think they get any easier.
As parents, we want to see the best in our kids. We talk to other parents about their achievements. A typical parent may brag about their child being on the honour roll or a sports club their child was invited to be a part of. They may share about the recognition their child received in Cadets or Guides.
Special needs parents want to share about the wonders of our children, too. But our pride may be in the fact that our child spoke at 8 years old, or learned to tie their shoe laces at 14, or shared a beloved and sacred item with a sibling. We are ecstatic (and often terrified) when they get invited to a birthday party or for a play date .
Would you even consider bragging that your child got invited to a birthday party or for a play date? It’s ok if that would never cross your mind, it just means that we function in different circles, on this great earth of ours.
Here’s something else that’s different…..
Parents of typical kids will probably never experience this situation, and if that is you, count yourself blessed. It’s a special kind of hell to go to an appointment and speak and share about all the ways your child is missing the mark. To spend a couple of hours talking “down” about your child. To fill in form, after form, after form, about all the things your child can’t do, and specifically doesn’t do, well.
You almost have to disassociate from yourself to do this. But you MUST do this, in order to get your child the supports they need.
So you do it, regardless of the fact that it goes against every parental instinct to cherish and protect. You dig out all the dirt and ugliness; and you lay it out there for all to see.
It’s hard because it’s not like you don’t know that there are things your child struggles with, but when you put it all together in one pile, at one time…..it’s overwhelming; and frankly, soul crushing.
That pile of crap in that picture up above……it’s all the stuff I swept out from under my couch. Some of it is garbage. Some of it is useful. Some is necessary. Some was misplaced.
It’s easier to know it’s there; but to only focus on what’s in front of you. If the room looks okay, then it’s good, right?
Its when you sweep it all out into the open that you are faced with a challenge. You can start sorting and do the work and effort that’s required to place things in order. You can throw it all out. Or You can sweep it back under.
You can’t throw “this situation” out or throw “this” away; and ignoring it doesn’t work out well for anyone. There really is only one appropriate option and that’s to put in the time and effort and to “sort things out”. As a parent of special needs children, those are two things that I have the smallest reserves of……time and energy!
But I will get up tomorrow and try to figure out what the next steps are because that is what you do when you love someone with all your heart and soul. When your goal is to help them succeed and be the very best “them” that they can be; you do whatever you can do.
If you have children with disabilities, you’re either nodding in agreement or horrified at what you may soon be asked to do.
If you don’t have children with disabilities, know that your friends, acquaintances, those parents……..they go through things that are tough. They do things that no parent ever wants to do; and they do it so they can afford their child the best in life. But those parents, they are tired. They are often overwhelmed. They may feel like they’ve betrayed the wonder and beauty of their child, in the name of “support”. The hardest part is that that there are no guarantees. You may not get the supports that are needed and then it feels like it was all for nothing; and that’s REALLY tough.
Parents of typical kids, I’m sharing so you can know…….so you can be aware…..so you can show compassion.
Not pity. Not ever pity.
But awareness, seeking to understand, and compassion are huge gifts that you can give us parents of kids with differences.
Well, here we are, day 1 of this Gratitude Challenge.
I’d love it if you would either leave a comment, here or on Facebook, Twitter or Instagram…..however you found yourself here. Or even just leave a post on your own profiles, using the hashtag #marchtogratitude.
It’s going to be fun to see the posts on social media when you search, using the hashtag.
I’ll be honest, I’ve been a pretty negative person. For me, living a life of gratitude has been born out of my misery and complaining; and then my desire to not be a negative person. Usually, I will start complaining or moaning about something; and once I catch myself….then I look for something good in the situation.
For example, I hate mornings. That’s already been established. So when I came downstairs to start the morning “cat herding” this is what greeted me.
Cool Whip Container of Ice Cream
I could have got upset at my boys (that seems like a typical reaction to this scenario) but I’m constantly looking to “flip the script”.
My first thought was, “Ice Cream for breakfast, huh?!?”
My second thought was, “Take a picture of that, and send it to your sisters.”
Third thought was, “Well, Breakfast is taken care of.”
No upset, no anger, no disappointment. The bucket of ice cream is going to be gone sooner than I intended, but I wasn’t planning on having any so it really doesn’t affect me and when it’s gone…..it’s gone!
They got calories, dairy, and then they took all that sugar crazy to school. So, I’m good!
To wrap it up…….I’m grateful that my kids are independent enough to get their own breakfasts. I may need to talk a little more about appropriate food choices, but in the end, they ate with no complaining and I didn’t have to do anything. I got to drink my coffee that I was also SO VERY GRATEFUL FOR!
I’m calling it a win and moving forward with the day.
I’d love to hear what you’re thankful for today? Coffee? Sunshine? Family? A Job? What?
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.
It’s hell.
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.!
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.
But me…….
She…….
I…..
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.
Find 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.
I got a call about 10 o’clock this morning. I could hear Siah screaming in the background. Jon hollered at me over the screaming, “I need you to come and get Siah.”
Not even finished my first cup of coffee and hair and make up not done…..I raced out of the house and down the street to our dentists office.
I walked in the door and they ushered me to a back room where I found this.
Good Saturday morning to you too!
Nothing like a spectacular dose of trauma to start the weekend.
It’s dental work. My boys needed fillings. How simple is that? Go in, get it done….BAM!
Not that simple.
I sat in the recovery room with Siah and listened to Judah screaming through 2 closed doors.
It’s hard to think straight when your world feels torn to shreds by trauma. When anxiety overwhelms to the point that nothing makes any sense. When trauma tells you that you are in terrifying danger. When you brain lies to you and it doesn’t matter because you can’t think beyond this exact moment of terror.
Siah was curled in a ball, yelling and screaming at me for letting them hold him down. He was so upset that I couldn’t even touch him or comfort him.
In the end, it’s more traumatizing for us because now that they have settled and the meds have worn off, they don’t even really remember what happened. Yay for the meds actually working.
I say that as sarcastically as I can because I was called there…..without the benefit of mind numbing meds, to witness and experience it all. To be hit and kicked, in fear. To be rejected and not allowed to give comfort.
As soon as he settled some, I traded off with Jon to go and see Judah, who was terrified, mostly because he heard Siah panicking. And being unable to see what was actually happening….he assumes the worse.
Siah actually finished his dental work. Judah wouldn’t let them near him…..even cracked out on meds.
We made it home eventually.
We’ll have to cough up the insane costs to have Judah sedated to actually get the work done.
Anxiety sucks.
Watching someone you love suffer from anxiety is brutal.
Experiencing anxiety is brutal.
Can I encourage you to have compassion for those you know who deal with mental health issues?
I’m gonna get up tomorrow, put make up on and go and sing my heart out. You’d never know what I experienced today by just looking at me…..and I’m not looking for pity.
Compassion and understanding though…..definitely. Especially when my boys are acting out and I have nothing left to give but I dig deep and create energy out of nothing.
But my sharing is not just about me. Be kind and compassionate to those parents and kids you know who struggle…….you have no idea what they really are going through and I guarantee you they won’t share the reality.
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.
You’d probably end up extremely jumpy and tense; and mistrustful of those around you. It doesn’t matter how much they seem to like or try to understand you, “survival brain kicks in and reasoning and logic shut down.” In fact, you’d probably not want to go where people and doors are.
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.
Nothing like a spectacular dose of trauma to start the weekend.
