The Undiagnosed

Imagine you are walking into someone else's house for the first time.  It is night and as you walk inside your host tries to turn on a light in the very dark living room.  Ooops, the bulbs have burned out.  Your host apologizes and runs to get lights while encouraging you to have a seat.  As you are left alone in the dark you really want to just stand in one spot but sitting seems much better.  You stumble over a end table.  Your hands reach out on front of you to ward off evil furniture spirits and the sofa jumps out and connects with your shin.

Now imagine the same scene but the light is on.  You can see everything clearly.  You find the couch, sit down, and manage not to come home looking like you and the furniture got into a street brawl. When the lights are on you can see what is there and how to work with it.

I would use the above description a lot back in my teacher days.  Especially when a child with special needs came my way.  I would encourage parents to seek answers so I could be the best teacher I could be for them.  Some colleges would argue that in looking for answers a child could become nothing more than a label or a diagnosis.  I would argue back that this would give me the tools that I needed to empower the child and help them succeed.

But what if you are not the teacher?  What if you are the parent?  For Cary Lynn her diagnoses were always pretty black and white.  There haven't been many surprises with them.  I don't define her by her needs, but work with her daily to be her best little person.  The lights are on and I don't run into too much furniture.

With Marvin it is so different.  All I got was "love him and he will be honky dorey".  Yay!  Nobody told me what meth can do.  Nobody told me about Shaken Baby Syndrome.  Nobody told me that taking an 18 month old out of a secure environment can wreak havoc and leave scars that last a lifetime.  Nobody told me that even if you are a violently abused infant that you don't outgrow and forget these things.

Don't get me wrong.  I did the research.  I sat with his social worker, my notebook of statistics and facts.  She was impressed.  I really did my work.  Or so I thought.  When Marvin came to us the lights in my house went out.  I tripped over so much furniture and banged my shins over and over again.

What has made it super hard is that years later I am still in the dark.  I find myself frustrated at times.  People saying he has this, or wait no he doesn't!  As I was talking to his therapist the other week about it he pointed out that kids like Marvin slip through the cracks so often because they can present pretty normally to the outside world.  And he can.  He is also a master chameleon, blending into his environment.  He had to be.  When he was little his survival depended on it.

Plus I am part of a new generation.  Raising a child who was born meth addicted.  I talk with other meth moms a lot and together we find solace.  We see our kids and the things they struggle with.  As one mom put it, "I tried to kill the best part of myself and nearly did.  When I see her struggle part of me breaks every time."  We break for our kids.

It also becomes hard explaining to the world around me about his needs.  Everyone wants him to be "fine". Heck, I want him to be fine! I would love to live in a world without specialty doctors, therapies, and a home routine that is so heavily structured.  I become frustrated at times just wishing for him to "snap out of it".

But that isn't going to happen.  Marvin can't help the meth or the abuse he endured.  He is always going to have needs.  Needs that others may not always understand or see but they are there.  He may also always live in the shades of grey when it comes to diagnoses as well.  Or he will fall into broad categories like traumatic brain injury and ADHD.

Living in the dark is hard.  As we get ready for another intensive round of testing in the next two weeks I am hoping that I will get a flashlight or even a stinking candle so I can find my way in the dark.  I don't want Marvin to become a diagnosis but I want to help him find his way so he can be the best he can be.  I want to empower him and give him the tools to help him succeed.  Because above all else he is an amazing little boy who has beat so many odds already.  A miracle and one of the greatest blessings I have in my life.  Lights on or off I am a lucky momma and I don't ever forget that!

Cerebral Palsy days and nights

Back in the days when I was in the working world I had many different kinds of bosses.  I had fun ones, quiet ones, ones that liked to pretend that they were in charge but the assistant director really ran the show. All types.  

Sometimes it was hard.  It felt like even though I was competent and could do things I got micromanaged.  I had bosses who loved to rearrange my classroom.  Who told me how to do things.  Who left me feeling so micromanaged that I sometimes felt that they doubted I was a competent human being.  It was frustrating, upsetting, and most of all humiliating.  If there is one thing I hate it is to be micromanaged.  It kills me.

I would get angry, go home, vent to my poor husband, and get over it.  I can honestly say in retrospect I didn't handle things too well.  I probably brought some (all right a good bit) on myself.  I don't like confrontation and I want everyone to hold hands and sing.  Well all that can get you in the end is steamrolled. So I buried it all inside and pretended it didn't matter when it really did.

Cerebral Palsy is a lot like that.  Except it never goes away.  You can't go home at 5pm and leave it at the door.  You can't quit it.  You live it 24/7.

It micromanages you.  It tells you what to do, it strips you of your dignity, makes you appear incompetent, weak, and then if that is not enough fills you with pain.

Some days are better.  Some days you are able to laugh, play, and do so much.  You feel good.  Some days you hurt, can't get out of bed, and just want the world to go away.  These days are hard.
Cary Lynn's micro manager doesn't care if she wants to do things or go someplace.  It doesn't care if she wants to sleep or play.  It even takes away her voice.

But Cary Lynn is a fighter.  She basically tells her CP that it can take a long walk off a short cliff.  She doesn't take crap from it.  Sure, it isn't always a bowl of cherries but she has learned that she is stronger than CP.

Even on days when we are sick, hurting, and just don't feel good she can always turn the charm and smiles on.  She shows me that you can always be stronger than circumstances around you.  That you can be happy even when things aren't going the way you want them to.  That you can still have dignity even when your body tries to betray you.

I love to teach my children.  But in the end they always end up teaching me more than I even will teach them. I am a stronger better person because of them.  One who now no longer is silent when things aren't working. I still have to finesse how I go about responding to situations, but I would rather be real than smothered. Cary Lynn is a warrior and I am proud to be a mama to a little girl who shows the world that you can be fierce despite CP.

A new view of Freedom

Today I am turning over my blog to Kathy.  Kathy is Cary Lynn's only link left in Early Intervention.  A year ago she wrote this piece on my daughter.  The other day when I was cleaning out some files I came across this and I remember how touched I was that someone wrote this about my little girl.  I think I am going to frame this so I can remember what an awesome little person I have in my home and what an awesome person I have on Cary Lynn's team:)

A New View of Freedom

By Kathy Guisewite ~July, 2013 ~

This is Cary.  I have the honor of visiting with her each week. As an Early Intervention Professional, I’m supposed to offer her family encouragement and wisdom and playful suggestions as to how we can all best support Cary’s development.  And I do this with great cheer and devotion!!  But what actually happens each week is that Cary offers me encouragement and wisdom and playful suggestions as to how I can live fully and freely in this life.

Cary tells me with every visit that the best way to defeat the tyrants in the world is by way of laughter and noisy raspberries.

She reminds me that music is always the best medicine when you are sad or grumpy.

She also reminds me that music is always the added joy on happy, carefree days.

Cary says that when the battles are tough, it’s time to put on the attitude of “just try and stop me” and press forward no matter how many times you get knocked down.

Cary says if you really want to make a difference in the world then be who you are as best you can.

Cary says the best way to evoke change for good is to be happy and help others to find their own happiness.

When I think of freedom and what that means to Cary, I think it means being loved.  She doesn’t seem to whine about what she doesn’t have.  She doesn’t notice the differences in her world and mine… she just embraces what is and loves the gifts given.

Freedom means so much to so many, and we are all grateful to live in a nation where we are free to pray and love and explore and grow as we feel individually led.  But Cary teaches me that freedom is also a way of thinking and living no matter what life tosses at you.  Cary helps me understand that freedom is a gift of the heart and the spirit… bound only by the walls our small minds erect.

As Cary finds and loves her own freedoms, I realize that even in times of dismay… in my own home or in the wider world… we can each add to the hopes of freedom by living like Cary.  Don’t take no for an answer.  Don’t live smaller than your spirit.  Remember that your joy is a source of goodness in the world.  And when all else fails, seek the light, the beautiful light that fills us with hope for each new day.

I love you, Cary.  Thanks for helping me to remember to live free.