The Price I Pay

Rick Lavoie talks about the emotional journey of the special needs parent.  Similar to the stages of grief, the special needs parent goes through the stages, in varying order and can slide back and forth across the scale.  Even once the “Acceptance” stage is reached, it is not permanent.

Various articles also exist on the fact that PTSD can and does impact special needs parents.

I’ll confess that I don’t call myself a special needs parent.  I don’t view my son as special needs.  He is dyslexic, he is not special needs.  The parents of special needs children and their children themselves are far tougher, far more awe inspiring, far more amazing and far more deserving of more grace than I or my son EVER deserve or need.

The foundation of my point of view on this matter, is that while he has a neuro-biological difference in how his brain is wired, which in turn requires that he be taught with the #ScienceOfReading, explicitly and with fidelity, he will learn to read and read well.  While dyslexia is life long, it is manageable.  The issue is the education system and the lack of acknowledgment and acceptance of his difference and how this difference requires that he be educated because the establishment does not embrace or recognize the #ScienceOfReading.

Yes, my son is in Special Education at school, but as my husband so eloquently stated, “he requires to be taught in a special way so of course he belongs in special education.”

The educational constraint, dare I say, the prejudice against anyone that dares to learn differently, forces the need to label my son as special needs.  It is the only way I am able to obtain for him even a fraction of the education he deserves, and my ability to do this is hinged upon the federal law that classifies him as disabled.

And, it is in the battle for that small portion, begrudgingly yet dismissively parsed out to him, that I’m writing about today.

I have shared that I felt burned out after the monumental battle this past school year, which in the end, I lost, but….

But….

It isn’t burn out.

I am currently struggling with depression.

While I did have postpartum depression, which by the way was not diagnosed until my son was 5, depression is not something I generally struggle with; it is not a part of my day to day life.  Like most people, I have periods in my life where I am depressed, but this is remarkably different.

And, I wish I could say that it’s because I lost the last round of ARDs.  That would be so easy; a nice pretty bow on top of a messy package.

The truth is, this journey is brutal.

We enter this dyslexic world with relief at understanding, with finally having a name to what is going on, but with immense fear at the breadth of what we do not know and plagued with the question or how will my child survive.

I threw myself in head first.  If it killed me and everyone around me, my son was never going to say that he was stupid again, I’d be damned sure of that.

So I navigate the road, even though I’m travelling blind and in the dark through No Man’s Land with no map and no guide.  I read, I study, I talk to people, I learn.  I’ve made good decisions, naive decisions and bad decisions.

I thought public school would be our saving grace because my son would be protected by federal law, just to find out what a monumental joke that was.  I’ve learned more about education than I ever wanted to know, and once learned it cannot be unlearned.

This, and other realizations along the journey, show you the abyss that we as #ParentAdvocates stare into, and it is an abyss.

I’ve said before that this journey is not for the faint of heart, but I’ve also said that until you are really and truly challenged in life that you cannot know how strong you are.

I know how strong I am, and it is in that strength, that I must confess the emotional price I am forced to pay.

I know, again like most people, that I function day to day with a certain amount of anxiety.  I expect every conversation I have to be negative, for me to be in trouble for something, for someone to be mad at and yell at me.  Certain conversational phrases have me bracing myself for disaster.  When someone texts me and says they REALLY need to talk to me TODAY I dread the conversation expecting nothing positive, especially if those messages come from family members or close friends.

I live most of my life never feeling good enough, smart enough, ready or prepared enough.

But, again, it’s not because I lost the last round of ARDs or struggle with some anxiety. 

I did not underestimate the moves and counter moves.  The chess pieces that were the players in the ARD meetings moved exactly as I had expected them to.  I was a Queen in check and it was up to me, having a kill strike open that would win the game, on how to move. 

They did not put me in check mate, I just choose to put the game in stale mate.

The reality is, it’s the entire process, it’s all of it, absolutely everything that a parent goes through and feels when they are fighting for a child with dyslexia.

For example:

A part of me died when my child hit the wall.  He was too young and the pain he felt was too much for someone so small.  My guilt in missing it, the cruelty I had heaped on him believing him to be pig headed and lazy, the cruelty of those who were supposed to be teaching him in letting him fall flat on his face is something I get to carry.

And this is what else I carry:

• My elation at his first successes at Lindamood-Bell and seeing some of my child restored to me;
• My devastation at his 2nd grade teacher giving him an F in reading after spending $20,000 on Lindamood-Bell remediation
• The realization in those moments that 504 was inadequate
• The further realization in those moments that education no longer cares about a single child
• The realization that what we had chosen to do in moving and placing him in public school was a huge mistake, and the ramifications of that reality.

And since then:

• The anxiety before every meeting playing though every scenario;
• The stress of the ARDs themselves, which at a minimum is 6:1 and at it’s highest has been 17:1;
• The emotional aftermath of the ARDs;
• Having to take a day off of work every single time there’s a meeting, regardless of what the meeting is, and the consequences that bears on my day to day life from the impact on my position to my inability for my family to take a vacation because I don’t have enough time because I burn most of it during the school year in meetings (Thank you DOL for clarifying ARDs fall under FLMA!  This is a game changer!);
• The sacrifice I am forced to make in my career because I have a child that has a learning difference that requires my vigilant focus (which in my book is NOT a bad thing and a sacrifice I GLADLY give);
• The need for constant study (DO YOU HAVE ANY IDEA HOW BADLY I WANT TO READ A BOOK OF FICTION?!?);
• The need for constant strategizing;
• My constant desire to help parents but never feeling adequately up to the task, fearing I will lead them astray and hurt their children;
• Dealing with the cruelty, yes CRUELTY, that exists in this seemingly wonderful open hearted dyslexia advocacy world;
• The complete inability to discuss dyslexia with many members of my own family due to comments on several of their parts that I am making a big deal out of nothing because dyslexia isn’t a big deal, period;
• Struggling to find tutors (we’ve had 5 in 3 years);
• Wondering what’s next when we finish the program we’re on because the completion of one program does not mean that remediation is complete, only evolving;
• Trying to juggle 2 working spouses with a school schedule and private dyslexia tutoring and wanting to somehow, someway find time to deal with subjects other than reading since public schools do not teach math correctly anymore (especially in Texas where they only teach to the STAAR), and not knowing how to fit that in too;
• Opting out of STAAR and dealing with that drama bru-haha, including having to hire attorneys;
• Questioning will my son be happy?  Will he be ok?  Will he survive his educational years?  Will I survive?  (Bear in mind the numerous people who have told me to my face that my son will probably commit suicide and I will be to blame.)

And the list goes on….

I put myself out there on social media, feeling inadequate to the task, and being told as much quite often.  Yet I keep going because awareness, education and empowerment are crucial to our community’s success.  The sacrifice of my anonymity is worth it, even if all I do is help one single person, knowing the reality is it’s only through numbers that anything will change.

My son’s teachers all think I hate them, when the reality is I do not, ok, I can name a few that I do strongly dislike, but most I love a great deal, but within the district I’m the enemy.

This has been my all consuming life for three years, and the price is depression.

My depression doesn’t by any stretch of the imagination mean I’m about to back down in any way, it just means that this is my emotional reality, my trauma, and I need to deal with it by seeking professional help.

And, yes, it is trauma because it’s constant stress and what’s worse is it’s a contrived stress because it is a construct of our educational system.

This is the price I pay, that all parents pay to one degree or another, every day, every year.

I’ve spoken to parents at the end of the public school journey, devastated by years of battling, and they have very little left, just grateful for having survived.

My heart breaks for the parents whose advocacy journey ends with their child’s suicide or imprisonment, not by any failure on the parent’s part, but by the failure of the system to care about children and education.

Our children are currency in a new economic machine and we as parents don’t recognize this unless we’re fighting the system.  We’re a David, fighting an army of Goliath’s, and we didn’t realize we were on the battlefield until we were already bloodied and maimed.

As for me, I know my child will be ok.  I know this because if I have to quit my job, sell my house and move into a 500 sq ft apartment so I can afford to home school him myself, I’ll do it.  He’s incredibly intelligent, more than the school district will EVER give him credit for being, and he is determined to see and reach his own success.  He embraces his dyslexia and how it sets him apart and he thinks it’s pretty awesome, that he’s pretty awesome.

I am depressed because this is my reality and the toll that it has taken on me is substantial, and will continue to be substantial, and I don’t get to give up.  At every turn I’m faced with a new issue, a new email, a new ARD, a new need for another ARD, etc.  I don’t get a break.

The evolution of the journey is emotionally taxing too.  There is never a simple answer, a quick fix.  There is no super glue in this reality.  One has to have the patience for time knowing time is constantly against your child.  You have to be on your toes, reactive, responsive, proactive where possible, ever vigilant for the next surprise.

This is my confession.  I am depressed.  I am owning it, not shying away from it and seeking help from a professional.  I am certain this will not be the only time I struggle with depression during this journey.  I am not ashamed to own my depression, to seek help.

I do not seek sympathy or prayers or pity. By sharing I only hope to help raise awareness and understanding on the fact that this is a hard journey with what can be very real emotional consequences.

To be the best advocate I can be for my son I must face this and come through the other side.  This is not too much for him to expect of me, to need of me; and frankly I owe it to myself.

In life I believe we choose joy or anger or sadness.  I like the story about what wolf you feed.  I’ve managed to teach my son that we choose how we walk through life.  Despite it all, or maybe because of it all, I choose joy for it is the only choice.

It’s just that, at the moment, I need someone to help me through.

xoxo

P.S.

Renee – Thank you for the mirror, and for helping me realize I was dealing with depression, not burn out.