IEP: Who Wrote That?

 

My daughter is…

brilliant

independent

sweet

loving

strong

 

She loves…

animals

sliding

watermelon

cuddles

nature

 

She has…

innocence

curiosity

compassion

love

autism

 

 

Autism. It’s ONE word out of 15 that I chose to describe my angel.  JUST ONE.

D’s diagnosis of autism doesn’t tell you who she is, what she likes, or what she doesn’t. It doesn’t tell you that her smile will brighten the darkest of days or that her laughter is the music that my soul dances to.

Why this, now? Well, I received a copy of D’s IEP and while reading it today I was brought tearfully to my knees with it’s language.

“D isn’t… D can’t…. D doesn’t…”

My mother’s heart bleeds.

I know that my sweet girl has challenges. I know that she struggles to communicate with her peers. I know that she sometimes can be overwhelmed.  None of this is new to me.   What is new to me is the callous, cruel focus; the word “can’t” in relation to my daughter. See, in this house, there is no “can’t.” There is not yet. There is hope. There is the will to never give up, never give in.

There is love. Unconditional, unyielding, unshakable love for the person that D is now and will become. I don’t care what the textbooks say she should be. I’m not raising a textbook. I’m raising a precious little girl to, I hope, be unafraid to be herself, to pursue her highest potential and be strong enough to stand against the winds that life inevitably blows.

Life with autism isn’t always easy. There are days, like today, when it can bring me to knees. There are far more days when I am in awe of D’s uncrushable spirit, her determination, her desire to learn.

No matter what the day brings, one thing remains the same: I am proud of D. I am proud to be her mom. No one can take that from me, or from her.

So, to whomever D’s IEP, I realize that it’s your “job” to point out D’s challenges so that goals can be made to work on them in the coming year. I don’t fault you for that. What I DO find fault with is that the entire focal point of this document was on what needs improvement. The next time you write an IEP, for D- or any other child- remember something, please. That document is more to a parent than just a clinical piece of paper. What and how you write can help or it can hurt. Do your job, but remember that there is so much MORE to the child you are writing about than a diagnosis.

So much more.

 

 

 

 

I Fear God, Wandering and Divides

I don't know about you, but this scare me...

I don’t know about you, but this scare me…

The names and faces of all of the precious children with autism that have vanished or died flash through my mind all of the time. As I think of them I worry about my own daughter.

I remember when adorable Mikaela Lynch disappeared and was later found, drowned, in a creek by her home… I was devastated for her, for her family and simultaneously terrified of my little girl finding the same fate… Much like sweet little Mikaela my girl loves water. My ex husband has a pool. For several days I harassed him about it. “Don’t let her near it when you’re not right there. Keep an eye on her. You don’t understand she could drown!” The mere thought of our little princess near that pool sent me into a panic attack. Friends told me not to think about it; don’t create problems where there aren’t any. They were right. I was going out of my mind with fear, knowing that her dad wouldn’t let anything happen to her, any more than I would. We might not have made it as a married couple, but he’s a good dad. I know this. I repeated all of these things to myself.

Months later, so many more children have perished… So many wandered from school; from home; from grandma’s house… never to be seen alive again. I shake my fists at the sky and ask “Why? Why God? WHY?” I have yet to receive an answer- or at least one that I can live with…

A fellow autism mom, advocate and a woman whom I have immense respect and love for recently posted a picture of her family- each one of them had their hand on their treasured boy; one who is severely effected by autism and who lacks any sense of danger… In the caption she begged that people look to understand, not to judge… It can happen to anyone.

Even her.

Even me.

Even you.

So what do we do? Do we wring our hands in despair, demanding answers from the divine when perhaps that is not where the answers lay at all? What if God is up there shaking His fist at us for not hearing Him?

What if the answers are not in the question, but in our response to the tragedies that befall our community every day…? What if we stood together BEFORE Avonte, before Mikeala, before the next child vanishes without a trace…? What if the camaraderie, community and care that flows so freely in the face of tragedy was actually part of our daily lives? What could we do then?

I think of the deep divide within the autism community… Cure vs. Acceptance, Vaccinations vs. Anti-Vaccinations… the divides are endless. What if, instead of pointing fingers and blaming others if we all stood together for our children, for our families?

Can you imagine? Try… for just a minute to imagine what life would be like if we treated each other with understanding, compassion and love BEFORE tragedy strikes… Could that be the answer? Could it really be as simple as LOVE? Think about the powerhouse we could be if we were all motivated by our love and commitment to our families and each other and not proving a point.

Blissfully ignorant.

Autism journey

When I began this dance with autism I admit to not knowing a thing about it. What I knew is that my princess, my daughter, the reason for my every breath was out of my reach. At just a year old she wasn’t saying anything- not Mama, not Dada- nothing. When I, standing just a foot away from her said her name it was as it the sound of my voice hit a wall that separated us, bounced back to me and lay broken at my feet. She didn’t turn to me with a smile as I’d seen so many other children her age do. She didn’t even seem to know that I was there at all.

Many nights I’d lay awake at night and wonder what I was doing wrong. What was I missing? Was I a bad mom? Those questions did a violent dance in my head as I wrestled with all of things it could be… Was she deaf? That didn’t make sense because she would come running from the other end of the house if she heard the bath water running. She loves baths! The only answer I could find was not that there was something different about my daughter, but that there was something wrong with me.  

At her one year check up I fearfully mentioned to her pediatrician that she wasn’t talking. Should I be worried? I knew I should be but in asking that question I hoped that she would reassure me: “Oh no, every child develops at their own pace.” Instead I heard the words autism, assessment, Early Intervention. As soon as she said it, I knew, in the way only mothers can. I felt the word enter my head and drop to pit of stomach and then sink slowly, letter by letter, to my feet. In a daze I gathered up this beautiful girl that I love so dearly and headed to the car. My heart was racing and I couldn’t think straight. Never for a single second did I think of my beautiful angel any differently- what I wanted was answers. I wanted to fix it. NOW.

Since then she’s received the “official diagnosis.” She continues to receive speech and occupational therapy. Most of all, she continues to be the most beautiful, loving, smart, (I could go on forever!) little girl I have ever had the honor to know.

In a little over a year this wonder-girl has gone from being entirely non-verbal to having a vocabulary that grows by the hour and becomes more communicative by the day. Every time she says something my heart sings. Her voice is the most beautiful music I will ever hear. She will now cuddle with me- more than cuddle; she molds herself to me and LOVES it when I rub her legs. There was a time when that was something I could only dream of, yearn for.

What were the ingredients of this transformation? Time. Love. Patience. Add a strong helping of God’s grace. Mix well and repeat. I thank God every day for giving me the wisdom to buy animal magnets and spend countless hours repeating the names and sounds of each. That was the start to her speech… The first time I asked her; “What does a lion say?” and she let out “RAWWR!” from the tips of her little toes I felt silent, happy tears sneak down my face as I swung her around the room in celebration.

Some days I miss being blissfully ignorant. I miss the ability to sleep at night without worrying about her future. Our future. Some days I mourn the loss of “normalcy.” I see other children her age laughing, playing, eagerly telling their moms about what they did or are going to do and it hurts. It hurts sometimes to see how different she is from her peers. There is a wall between her and those around her most of the time. I feel it’s presence; sometimes I think I can reach out and touch it- and it breaks my heart. I see the yearning in her eyes, the deep desire to understand, and the confusion. It is in those moments that I wish I had a magic wand that would break down that wall- and cry inside because I don’t.

And then there is every other day… the days that I spend playing with her, weaving therapy techniques into our every day, ordinary life. The days that I watch her in amazement and pride as she makes a “picnic” for us to share; yet another experience I wasn’t sure I’d ever have with her because of autism- and yet she’s doing it. The days that I want to burst with joy because she took my hand and led me to the couch with one her many books. They seem like such small things but they aren’t in my house. These are the moments that will stay forever frozen in time. These are the moments that I appreciate not being blissfully ignorant.

I remember being in a store a few months ago and there was a little boy walking with his mom. I think he was around 5 or 6. He was rattling off in excitement about something he had seen- and of course wanted. I keenly remember the expression of exasperation, the tone of annoyance in the mom’s voice as she responded. I don’t remember what she said. I was too caught up in my own thoughts… I wanted to tell her to be grateful that he could tell her what he wanted, what he feared, what he needed. I wanted to tell her that his ability to share his world with her was a precious, precious gift. I wanted to gently shake her and ask her, “What would you do if he couldn’t talk?”

I realized then that being ignorant wasn’t blissful at all. Sure it had blindly relieved some of the stress but that was such a small thing compared to the joy of understanding.  I see the world differently now. I see the things my daughter sees like the rain that she loves to watch fall from the sky. I feel the myriad of textures that exist in the world around me because I have made a conscious effort to try to experience the world the way she does. More than anything I know just how wonderful it is to watch her overcome. I’ll take that over being ignorant any day.