Parenting PTSD, the Educational Version

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.

Be a part of the solution, not the problem.

Executive Function

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!

Here is link to an incredible article by Mair Elliot on Executive Function and how frustrating, and unpredictable it is to live with Executive Function Deficits; how much effort is required on a daily basis, and how it can affect quality of life even though the individual may be intellectually capable.

Please read this article with the intent to learn and understand.

Different, not Less!

Facing It Head On

I’m having a hard time settling down tonight.

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.

Take Aways…….

  • Be aware
  • Seek to understand
  • Have compassion
  • Be kind – Always Be kind!

Advocating Hell

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.!

Hear us! Really hear what we have to say!

Who will YOU see?

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.

But it will be worth it! I promise!

Dear School System…..

To the School System,

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.

Complex trauma is:

  • Chronic
  • Begins in early childhood, and
  • 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.

 

Connection

I posted a picture the other day….


And my thoughts keep returning to this…

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:

  • Social/emotional deficits (Autism)
  • Severe Executive Function disorder (ADHD)
  • Faulty sensory perception (sensory processing disorder)
  • Constant worry and stress (Anxiety)
  • 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.. 

To Be Known and Loved

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.

And yet……..

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.
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?

 

 

Will you……

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……….

For Acceptance

For Connection
For Understanding
For Compassion
For Love

Can you imagine not understanding the social rules of the world?

Can you imagine not being able to read body language or facial expressions?

Can you imagine not understanding “inferences”?

 

Please try to imagine.

Please be accepting of those with differences.

Please gain understanding.

Please have compassion.

Please show love.

A Fairly Regular Week Around Here.

IMG_9079I have these brief moments of clarity. Unfortunately, they are clouded by the fog of chaos and exhaustion that is my life these days.

This past week has been particularly trying and yet, it’s really not any different than any other week around here.

Jeremy had an epic meltdown on Monday night….what that means is that he fought against everything we said and needed and asked him to do starting at 3:30pm. It exploded at 6:30pm, with him huddled in a sobbing, screaming ball on the kitchen floor, begging us to leave him alone and to not touch him. All of this while trying to get the two little boys through their evening chores and headed up to bed……which is it’s own gong show of happiness. We finally got Jer settled enough. He had a great chat with Jon and was able to clearly speak of what was going on for him. It’s just too bad that it took 3 hours of intense energy and chaos to get us to that place.

Tuesday morning (and most every morning) involved a great deal of wrangling to get Josiah to school. He has a lot of anxiety and getting him to school in the mornings involves a tremendous amount of creative thinking and fast talking to movitvate and challenge him to actually make it to school. Tuesday afternoon, I picked Siah up from school and took him, Judah and Xandra to our family Dr. Siah has a few warts on his hands and has been getting them frozen off. He had a massive anxiety attack thinking about getting them frozen off and ended up making himself sick in the waiting room of the Dr.s office. He puked 4 different times and managed to hit the garbage can for 2 of those…..the other 2 required a lot of paper towels and a fair amount of apologizing on my part. I finally promised him that we would just “show” the Dr his warts and that I wouldn’t make him get freezing. After that, he didn’t puke any more and miraculously recovered…..no more puking that evening and he ate well and had no issues. I HATE ANXIETY!!!!!

Wednesday was a quiet day…..I remember thinking how weird and bizarre it was to not have anything crazy going on. Jon did have to work on his second job that evening so I solo parented the bedtime routine and it’s just not as fun as it sounds like it could be.

Thursday was a crazy day. Last week I got a call on Tuesday asking if we could come in to the orthopedic clinic on Thursday for an appt with Dr. Pike – an orthopedic surgeon – who does both pediatric and regular orthopedic care. He specializes in arms, shoulders, wrists, hands……This is the surgeon who will follow Geli into adulthood. I couldn’t make the appt for last Thursday because all the appts are in the afternoon on Thursday’s. This means that I have to arrange pick up from school for Josiah and babysitting for Judah. Fortunately, my mom was able to come this week and watch Judah and pick up Siah. Before my mom got to my house, I managed to tidy the house, do the laundry, clean the kitchen, make a batch of chocolate chip cookies for an after school snack, put together a roast beef for my mom to throw in for dinner, and a quick note with pertinent details for my mom regarding that afternoon.

I was exhausted before even leaving the house. I remember thinking to myself,

“Why don’t I have any help?” That was quickly followed by,
“I try to do it all by myself so that I’m not a bother for anyone.” Which was followed up with,
“But I’m one breath away from breaking…..I can’t do all of this.” And then,
“Why do you try to do it all by yourself?”
“Because I don’t feel that I’m worth……….. bothering people.”

I had a lot more thoughts, but that one hit me pretty hard. I needed to leave for the hospital so we wouldn’t be late and so I filed that thought for later….

Angelica’s appointment was for 1pm and I was really hoping that we’d be quickly in an out before traffic started. There was a surgery that called the dr away just before he came to see us….which means that our quick appointment turned into a 2 hour affair. Which is not bad for “hospital time”.

The long and the short of that appointment, is that Angelica will definitely need surgery. If fact, her shoulder is bad enough that if she was in pain, they’d replace it now. The surgeon said it was “really ugly.” Once again, the comment we keep hearing is, “You’re not in any pain?” It looks bad enough that they expect she should be in a lot more pain than she is. We are so incredibly thankful that she is not in pain. And because she is not in pain, we can put off replacement surgery. She will most likely be looking at both a shoulder replacement and an elbow replacement but it could be a while, yet. This is great news and frustrating, at the same time. Geli has limited mobility in her shoulder and her elbow has a short range of motion. It doesn’t fully extend and won’t fully contract either. She has learned to compensate by reaching with her left arm if something is high above her or by using her right arm, if she needs to extend her arm straight out. It’s still awkward, but we choose to be thankful that she is alive and has both arms to be able to use. We are incredibly thankful that she is not in pain because living with constant physical pain is a horrible, horrible thing to have to do.

We finally headed home…..arriving just in time for me to pick up Jeremy and take him to a counseling appointment. He had his appointment from 5-6pm. I dropped him off, connected with his counselor about a few issues and insights from that week and headed back home to grab a bite to eat before I headed back to pick him up.

His counselor is so kind and thoughtful; and asked how I was doing. Truthfully, I don’t even want to answer that question because I am not doing well. I think I hit breaking point a long time ago and I’m desperately hanging onto the belief that this is a season and it, too, will pass…..I’m just very tired of existing. I’m very tired of all the issues. It’s been a very long time of chaos and conflict; and I’m not so sure I see it ending anytime soon. I gave her a pat answer….and then I answered truthfully and then I cried; then I pulled myself together and took Jeremy home to finish off the evening.

Friday morning brought it’s routine school related challenges although this time, it was Judah who decided to have a flip out. He did not want to go to “school”. He wanted to stay with me. He was clingy and whiney and so very unlike him. He typically fusses about not wanting to go to school…..I think mostly because that’s what Siah does and it must seem like that’s just what you are supposed to do in the mornings……but when we get to school, he goes in and is so happy to see his teachers and friends. He kisses and hugs me and heads off for the day without a second glance. He was SO UPSET. It took about 15 minutes to settle him and I was really confused about why he was doing this…..I even questioned just taking him home with me, because it was so very out of character for him.

Friday afternoon, I picked up Judah from preschool and then picked up Siah. Siah’s desk looks like a recycling bin. It is so full of random bits of paper, junk and garbage. I go in about once a month to scrape his desk out. I put all his pencils and crayons back into his pencil box and stack his duotangs and exercise books. I throw out all the garbage and collect the “treasures” to take them home. He struggles with the “messing with” of his treasures and would just rather live in the chaos – on the best of days – Friday was not one of the best days……..

He melted down in the classroom. Tears, yelling, crying, pleading…..he was anxious that if he brought the 500 origami creations home that they would get destroyed or lost or somehow messed up. He just wanted to leave them at school, but when your collection is shoe box sized and stuffed in your desk…..it just needs to come home. We finally managed to get his desk tidied; the creations in an actual shoe box and him out the door. The real fun started once we got in the van and he refused to put his seat belt on because he “HAD” to take the box of origami back into the school. He screamed at Judah for fussing at him. He screamed at me for everything. So much yelling and pleading; and zero grasp of the reality that it was not going to happen. It took 15 minutes. I have it on video. I’ve been recording “events” for when we go for his assessment at the end of February. It’s so much more than just a normal upset or frustration.

By the time I finally got him calmed down enough and we headed home, I was exhausted…done. We fed the kids frozen pizza (cooked, obviously) and sat and watched videos.

Saturday was the anniversary of Nathaniel’s birth and death and was just a low key – stay at home day. I’m ever so thankful that the kids held themselves mostly together.

This is not really an “out of the ordinary” week. Maybe the fact that I don’t have an actual “incident” to report for Wednesday or Saturday might make it memorable in a positive way….but it all feels less than positive.

And the biggest hit for me this week….bigger than Jeremy’s meltdown, bigger than Judah’s flip out, bigger than imminent surgery, bigger even than Josiah’s epic flipout…..is that fact that I don’t feel worthy.

I feel worth less…..

It’s a pretty crappy feeling.

Why?
Why do I feel like this?
Why do I see myself as worth less than others?
Why?

I don’t know…..but I think I need to figure that out.