By the middle of kindergarten, when he was 5, Kevin’s aggressive behavior at home and at school was completely out of control.  Whenever we made a demand, or said no, or changed the schedule, and sometimes for no discernable reason at all, Kevin would hit, kick, punch, spit, bite, and scream.  He attacked our animals and broke our possessions.  The situation at school became so dangerous they padded a small office next to his classroom with gym matts and called it the “calm down” room. When Kevin started tantruming the assistant would perform what’s called a walking restraint and escort him there so he wouldn’t get hurt as he hurled himself against the walls.  By state law, any time you restrain a child to keep them or yourself safe, the parent must be contacted immediately.  Every day I was called at work, sometimes three times a day.  We hired a behavior therapist, the school psychologist stepped in, meetings were held, action plans were put in place, and despite everyone’s best efforts the situation got worse, and worse, and worse.  

Then came what I believe was the very saddest, loneliest day of my life.  I believe this is the day I really started my special needs journey as you call it.  Oddly enough it was a gorgeous day.  You know those rare, warm, fall days where the sun is shining bright and leaves are falling all around you at their peak color?  The school was a significant distance from the house but I decided to walk, thinking Kevin might enjoy collecting leaves with me on the way home. 

I could tell something was amiss the moment the school building came into view.  Although it was early, several moms were congregated by the front door, looking in, acting concerned.  Thankfully my friend Donna was there so I asked her, “What’s going on?”  Gesturing to the other moms she said, “They’re being ridiculous, it’s just a lockdown drill.”  Relieved, I sat down next to her and waited for the bell to ring.  That’s when I noticed the school psychologist peering out of her office window.  The moment our eyes locked I was flooded with dread:  this wasn’t just a lockdown drill.  This had something to do with Kevin and it was awful.  I can still see the kind sympathy in the psychologist’s expression as she gestured to the side entrance of the building.  She led me to her office, offered me a chair and a box of tissues, then took my hands in hers.  “It’s bad,”  she said.  “It’s the worst we’ve seen.  On the way back from computers Kevin stopped in the middle of the hallway and demanded IPAD time.  Miss G showed him his schedule and gently reminded him that it was time for math.  He kicked her, pulled her hair, then pulled down his pants and tried to urinate on her.  That’s why we called the lockdown drill, so none of the students would see him behaving that way.”  She stopped then, giving me a moment to process all of it.  “Ok,”  I said.  “Where is he now?”  She took a deep breath, and I could tell she was trying not to cry.  “Miss Sue escorted him to the calm down room.  He’s there now, in a restraint, still tantruming.  We’re going to wait for him to stop screaming before we dismiss the students.  We had to send Miss Sue home early because as she was performing the escort, Kevin headbutted her and nearly knocked her out.”  Again she paused, allowing me to process what I’d just been told, but she couldn’t hold back her tears.  Gripping my hands almost too tight she said, “I’m sorry Rachel.  I’m so, so sorry.” I’m crying now, remembering her face at that moment, but I didn’t cry then.  I guess I was in shock.  I said, “It’s OK.  I’m OK,”  even though it wasn’t and I wasn’t.  She rallied then.  “OK.  I’m going to get a status report and be right back.”  Only a few minutes later I heard the bell ring and students tearing out of the building.   She returned and knelt down in front of me.  “So Kevin isn’t safe yet but all the children are gone and no one saw anything.  We brought your girls to the library and told them you got caught in traffic.  They’re having a grand time reading books with Miss Marian.  You sit here and relax.  I’m going back to the calm down room to see how I can help.”

There really are no words to express how I felt after she left me alone.  Dead?  No.  Death is an ending.  This moment was a beginning.  I don’t remember what I felt but I can remember what I heard.  I remember what I said to myself.  “This is your life and it is awful.  It is the saddest, loneliest, nightmare of a life anyone could possibly live.  It is not a life worth living.  Your child is a monster and he is never going to get better.  Nothing is ever going to get better.  All you will ever know for the rest of your life is shame, pain, and fear but you’ll do it. You’ll live.   You’ll live for the 2 girls that are counting on you to make everything OK.   You’ll learn to hide how badly you wish you didn’t have to live anymore for them.   And then one day you really won’t have to live anymore.  You’ll take one big breath in, one big breath out, and it will all be over.  That will be your reward for enduring this punishment you have to call an existence.”

Published, your request is as follows:  Write a letter to yourself on the day you started on the special needs journey.  What do you wish you could tell yourself on that day? What do you wish you would have known?

I don’t want to write a letter to myself.  I want to walk backwards in time,  into that office, and hold Rachel in my arms the way I would my daughter.  I want to say, Cry my love.  Don’t hold this in, it will poison you.  Cry it out because it’s devastating and cruel.  Cry because you are a wonderful mother and person and no one deserves this.  Let your heart break.  You need to scream and cry and allow yourself to feel the agony.   Look at me, you are dead wrong about something:  True courage isn’t holding yourself together, it’s allowing yourself to fall apart.  If you allow yourself to be destroyed by this moment, you can rebuild yourself starting from this moment.  

Listen to me.  I know you think this is what the rest of your life will be but you’re wrong.  Everything is going to get better starting now.  The change will be painstakingly slow, but because you are fucking incredible, a year from now Kevin will be a completely different child.  You’re going to hire the best behavior therapist money can buy and do EVERYTHING she tells you to do up to and including allowing Kevin to throw his shit.  This therapist will collaborate with the school and create a behavior plan that works and is implemented universally so Kevin understands the rules are the same wherever he goes.  You will visit a developmental pediatrician who will prescribe medication for Kevin’s aggression.  I understand you have reservations about that, but you have larger reservations about him being sent to a private school outside the community for aggressive children.  Desperate times call for desperate measures.  

After only two tries, the pediatrician will settle on a medication that makes a HUGE dent in Kevin’s manic behavior.  He will start responding to the behavior therapy.  He’ll start learning to accept the word no, tolerate changes in the routine, communicate his feelings, and breathe through his anger.  It will be a year of seemingly endless therapy sessions, countless failures, and an ocean of tears but by September of next year the “calm down” room will be somebody’s office again.  Instead of getting three calls a day from the school you’ll be getting 3 calls a month.  The boy who avoided his neurotypical peers like the plague will gradually start to show an interest and by December will be spending half his day in the general education classroom working alongside other children.  Come winter he won’t need behavior therapy at all and will be enrolled in the firm’s social skills program instead.  By spring Kevin will be named 1st Grade student of the month.  When you get to the library for the ceremony, the entire team from Kindergarten:  his teacher, Miss Sue, the psychologist, and your behaviorist will be there to surprise you with balloons, cupcakes, and a card that reads,”You did it!”

I can’t tell you it won’t be a long, winding road with a lot of mud and nasty bumps , but I can assure you it leads somewhere beautiful.  And I hate to say it, but that road could have been a lot shorter and less muddy if you hadn’t wasted so much time being ashamed. I know you are afraid to admit what’s happening because people can be mean and judgemental  but you’re living proof the world is littered with kind, loving souls who would have helped you along that road if only you’d admitted you needed a ride.  

You have NOTHING to be ashamed of.  This is NOT your fault.  You’re doing the best you can with what you have so move forward and for God’s sake let people in.  You can’t carry the weight of this all by yourself and the only reason you’re trying is because you’re afraid people will judge you.  FUCK THEM!!!!!!!!  Fuck anybody who wants to judge you. Tell the truth.  Tell it to anyone with two ears to listen.  I learned way too late that when you’re honest about your pain, kind people actually gravitate towards you. When you find the courage to open yourself up, so much goodness comes flooding in.  

Now I must warn you, even if you do everything right and accept all the help that’s offered, there will be regression.  You’ll go months with no behaviors at all and then, POW!  He ‘s kicking you in the shins or pulling the dog’s tail because you said no to a third cookie.  You’ll be terrified every setback is a portal back to this horrible moment where you’re sitting alone in the psychologist’s office wishing you didn’t have to live anymore.  Have faith.  Regression is part of the process and because you are an amazing mother you’ll always find a way to get Kevin back on track.   

Everything you’re hearing in your head:  you’re a piece of shit, you’re to blame for all this, you’re being punished, you don’t deserve to be happy, etc. it’s all a lie.  That’s fear and shame talking; it’s not real.  I am real and I promise, you are the best thing that could have happened to Kevin.  The braces he uses to walk?  Gone.  They came off in third grade and he can run as fast as any other boy (though admittedly he bumps into shit a lot.)  The doctor who told you to learn sign language because Kevin would probably never speak?  In 5 years you’re going to bump into that asshole at a party and tell him what a complete DICK he is for telling you that because Kevin speaks non-stop in full sentences.  P.S. this will get you barred from CHOP but you hate that place anyway.  Antisocial behavior?  Kevin has a harem.  Everywhere he goes he’s surrounded by adoring women cooing over him and attending to his every need.  He goes to football games and dances and was a counselor at camp this summer.   I don’t think he was much help but that’s beside the point.  He’s part of a community theatre group, a complete ham, and performs in two plays a year. The aversion to sports?  He’s been swimming for The Special Olympics for 4 years and has 6 gold medals.  Flapping?  He hasn’t done it since 1st grade.  Sensory sensitivity?  All gone by junior high. Poop and pee accidents?  Not a single one in two years.  The aggression?  We still struggle with it at home occasionally but he hasn’t been aggressive in school since 5th grade when he hit his aide with a wiffle ball bat.  That’s what you get for telling Kevin gym is over.  The point is, Kevin is the best he can be because you were never willing to settle for anything less.  You fought every battle and won.  Whatever the hurdle, you found a way over it.  No matter how far the setback you eventually found a way forward.  You are amazing.  You are kind.  Just be kind to yourself or it will be years before you finally release all that shame and guilt you don’t deserve to feel.

In about 5 minutes the psychologist is going to come in here and tell you that Kevin has calmed down and Miss B is waiting with him outside.  She’s going to hug you tight and tell you not to worry because they’re going to find a way to help him..  This will open the floodgates and you will sob into this woman’s shoulder for a good ten minutes.  After you’ve dried your tears she’s going to tell you not to give up because she’s not giving up and neither are his teachers.  

This is not your forever, it’s day one. 

That’s what I want to say to Rachel. 

And to all the mothers out there like me, I want you to know that nowadays when Kevin has a bad day, I refer to it as a lockdown drill.   Lockdown drills are frightening at first when that piercing alarm sounds out of nowhere and you’re not prepared.  Then, when you realize what’s happening you just go through the motions.   It’s annoying, inconvenient, and a little unpleasant sitting in the dark waiting for it to end, but it’s not frightening because you know it’s not real. Everything is fine and everyone is safe.  It’s just a lockdown drill, and any moment now the light is going to come back on, the sound will stop, and over the loudspeaker someone will say, “Good job everybody.  You did it.”