Wednesday, May 22, 2013

A school for Dominic

Dominic enjoying some Gram time :)
Two days ago we were fortunate enough to tour a school exclusively for the severely disabled.  Although Dominic is not yet 2, going to this school means moving our entire family near it so we wanted time to plan, in hopes of avoiding any "chicken with its head cut off" chaos, which is quite typical for our family.  And besides, children with severe disability can start school at 3 rather than 5 like typical children, so really we only have a year.

I'm not quite sure how to start this post, or what to say.  I hope this is not offensive to anyone.  But keeping loyal to my mission of allowing a peak into life with a special child, I must give myself to you honestly.  The feelings that swell in my throat when I think of that hour spent in this school can be summed up in one word: "sucky."  Forgive me for not being eloquent in my speech, but you see, my mind doesn't think that way.  It has become accustomed to brutal honesty, and if I'm to remain faithful to myself, it is this same brutal honesty I need to share with you.

Now, don't get me wrong, the school is amazing.  Everything I've heard of it from fellow professionals is right.  It is one-of-a-kind, amazing, caring, nurturing, fostering the dignity of the child with special needs.  To the mom however, all this therapist mumbo-jumbo jumped right out of the window.  Being there hurt.  You know when your feelings are hurt to a degree that you have physical pain in your heart and stomach?  As a professional coming into that building to work, I would have been in heaven.  As a mom coming into that building, I felt like I had been kicked in the throat.  Let me explain...

We walked into the building and immediately saw the hall lined up with wheelchairs, one after another.  As it turns out, every child in the entire school, except for 1, is in a wheelchair.  Furthermore, they don't believe in allowing the children to sit in their chairs all day at school.  We move  from position to position throughout the day, and they make sure the students do the same (**score 1 for promoting dignity of "special" kids**).  We walked into the office and everyone, including the principal, stopped their work and came out to greet us.  They spoke directly to Dominic first.  Every single staff member went down to his level, touched him, and spoke to him like a person.  Everyone remembered his name and even started to call him by a nick-name, "Dom."  There was not one employee who greeted us (the parents) first, and this is the way it should be.  Everyone oohed and aahed over him, talking about how big and handsome he was and how they hoped they could work with him.

Then we walked down the elementary hall and went into every classroom.  There was one teacher, one assistant and 4-6 students in each room.  Every student was in some sort of therapeutic seating chair/device or standing frame, doing some sort of appropriate task.  In one classroom, there was a little girl who was deaf-blind who could sit up on her own.  She was shaking a bottle of water mixed with glitter and holding it right up to her eyes so she could see it.  Another girl was lying on the floor putting shiny beads into a basket.  Another child was lying on a mat in a stimulation corner, batting at the toys hanging from the ceiling.  The teachers were attentive.  Everything was appropriate.  A lump swelled in my throat.

We went to the next classroom.  A child was sitting in a special chair, also deaf-blind, happily trying to see who the intruders into his classroom were.  One boy was sound asleep, postictal due to having a seizure that morning.  Two other children were in standing frames, getting ready to go for their group water-play activity.  I felt sick to my stomach.

Then we went to the third room.  A man who volunteers his time was playing the bongos, doing a drumming group with the middle schooler's and high schooler's.  The sound was intense, what I imagine natives dancing around a fire in the Amazon would hear.  I walked in, the lights were dim, the sound was pulsating with the drum beats.  I saw 10-12 older kids with severe disability, all in wheelchairs.  The child closest to me was trying to move his disobedient arms to help beat the drum.  Another child, next to him was holding what looked like a shaker, trying, and apparently enjoying, to ad to the music, though without much success as it would appear to the outside world.  Dominic smiled, he liked the deep, loud rhythm.  I ran out, unable to control my emotions any longer.  I stood in the hallway and bawled like a little baby until a sweet woman saw and walk up and embraced me.  She told me it would be okay, and that Dominic would be happy there, that she would make sure he would be happy. 

After I composed myself, the tour continued.  The gym had a giant blow up mat the kids can lay on to feel movement and all sorts of other gym equipment that is appropriate for such low-level children.  The play ground was totally wheelchair friendly, including the wheelchair swing and the net swing where you can lay a child in and swing him.  We finished by sitting in the teacher lounge and talking about logistics, age for enrollment and so forth.  The sweet OT who gave us our tour said Dominic would have to be evaluated to come here, but he obviously would qualify.  My immediate silent gut reaction was "what?  He's not like these kids!"

As I said before, this is any pediatric PT's dream job.  When I was working, I loved to work with children such as these.  They are so simple, so good, so loving, so challenging.  They come with complex histories that satisfy when understood and defeated.  It is joy helping a child do something they were never supposed to do.  I gloried in breaking the chains of a prognosis, being behind the child as they succeeded and proved that doctor wrong, being beside the mom as she saw her child beat the odds and rejoice.

Perhaps I will eventually think like-wise of this place from a mom's perspective.  The harshness of seeing these kids, so many in one place, who live in disobedient bodies with minds that have betrayed their inherent goodness hurt.  Mostly, it hurt because I had to admit that these kids were my kid.  My child, though now still a toddler, is like these children.  This is his peer group.  As the time goes on the gap between Dominic and the other kids his age grows.  We marvel at his slightest accomplishments.  He are impressed when he looks at something, when he turns over to his tummy, when he holds his head up, when he reaches out to touch our face.  But he is almost two.  He should be running, jumping off of things, climbing, getting into trouble with his siblings, sitting in time out, potty training.  He is a perpetual baby.  The reality of this fact, perhaps for the first time so concretely, lanced my heart, delivering a near-mortal wound.  Having to face the reality that he really won't get better (unless a miracle is willed by God), and that he belongs in such an amazing school was daunting, discouraging, and sad.

I do not curse his impairments, nor the God who made him that way.  Still, I love his eyes that can not see my face, his ears that jumble my speech, his mouth that can not say "mommy," his throat that will not swallow, his heart that presents holes, his tummy that has to be fed directly, his little insides that were made backwards, his arms that can not reach for me, his feet that can not run to me, his mind that can not think clearly.  I love him, all of him, just how he is.  I praise God for giving him a broken body, a broken mind but a whole soul.  I praise God for allowing me to hurt, this is a blessed poverty.  I praise God for my broken heart, as I realize so many people do not take the time to suffer with the poorest.  I praise God for allowing me to be joined to our Blessed Mother who also watched her Son suffer, I am never alone in her company.  I praise God, for in His goodness He has given my children the opportunity to grow in charity, humility, and patience by being raised with such a saint as Dominic.

We have time to decide if Dominic will go to that school.  Most likely he will and most likely I will learn each child's name, their personality, their likes and dislikes.  Most likely I will fall in love with each and every one of them.  Most likely I will rejoice with their mothers and mourn with their mothers.  Most likely I will become family with the amazing people who work there.  Most likely I will work tiresley to promote the dignity of every last child in that building.  But for now, I still hurt a little, still mourn Dominic's reality.  Still glory in his innocence, his goodness, his being made perfect in God's eyes.

Totus Tuus!


  1. Dear Chasity,
    You put it so well. I can empathize in a different way. On Joshua's first birthday we took him to the hospital and heard all about transplantation. Suddenly it became real and I understood. Josh would never be normal. My son looks normal and he acts normally but he is not and will not ever be normal. I sat in the room and cried and cried. I told a friend and she was surprised that I had not yet grasped this very obvious point. But you don't in the middle of crisis mode. You don't until you are ready and then it is like mourning all over again. He is 12 now and I still mourn sometimes. I am happy with the gift as he is, but sometimes there is an acute moment of reality and it hits all over again. "I believe Lord, help my unbelief.".

  2. You, dear Chasity, are an amazing person. I cried when I read this post and, for a moment, had a small connection to your reality (and Dominic's). I cannot fathom having to live like this, nor can I understand your ability to give thanks to God. I know I would be questioning Him. What did I do wrong? Why am I being punished? I do realize that this is the wrong way to think, but I know I would. I continue to read your blog and marvel at your strength and your faith. It is inconceivable to me. Please know that, not only are you a pillar to your son, but you are an inspiration to me. My life problems are minute by comparison. How can I be so selfish? I want to be more like you! God bless you all. Tammy