loving a child with mild cerebral palsy

He`s beautiful, isn’t he?

I fell in love with him the first moment I laid eyes on him.

Just after midnight, born 7lbs, 8 ounces and without a pulse.

When I look back on the past four and half years and all our family has gone through. It seems like a lifetime ago.

All those worried nights, lying awake in the darkness and listening to him breath. The knowing that something was wrong and wondering when was someone going to figure it out before I went insane?

When I was pregnant with him I knew he was going to be special.

I knew there would be something different about him.

I just knew.

It began after four months, late at night after leaving the hospital because of a scare and needing to get things checked out to make sure I wasn’t having a placental abruption, like I did with the last one (before him), my daughter.

There was this young man at the bus stop where my husband and I waited, he must have been maybe 23 or so. Out of the blue he asked if he could say a prayer for the baby I was carrying.

Two months later it was a woman, walking downtown and she stopped. She picked up a paper I had dropped and smiled at us. “You are expecting.
That’s wonderful!” She said. Then she gazed over me and frowned. She asked if she could say a prayer for the baby.

Two more incidents followed with two separate individuals we’d never met – until we came into our last month.

I was standing outside the bank. Forgetful Dad (hubby) I call him that because he has a brain injury which basically renders him like Drew Barrymore in 50 first dates, forgot our keys for our bike locks at home.

So there I stood, big as a house and waiting as FD and my oldest son JJ as they went home to fetch the keys when this elderly looking man approached me. He was a painter there to do work on the bank’s outside sign.

We got to chatting and it happened. He placed his hands on my belly and I’ll never forget what he said.

“Lord, keep this child safe for he’s one of yours and god bless this family.”

I still get chills just thinking about it as he followed up with a prayer of peace for me not worry. It would be all right.

My son came three weeks early.

He came fast.

Twenty minutes, high risk labor and finally he was here.

They did get him to breath (on his own) too. They also released me fifteen hours later with a severely jaundice and sick child due to bed shortages.

We went back in two days later after Bradycardia and Apnea took away my sleeping at nights making calls to 911.

Trace went under the billy lights.

He regained his colored.

But something — something was different about him.

As a mother you know — you know what I’m talking about?

When something is wrong with your child. You feel it. It’s hard to describe without coming off sounding like a lunatic and over-protective. But I knew there was more to our son’s condition then just (slow to develop) or (failing to thrive) but will catch up.

At first they thought it was Cystic Fibrosis.

His first test came back positive and my heart sank. But a retest showed he was normal and that wasn’t it. It was something else.

At a year he couldn’t sit up on his own. He didn’t really cry much. His eyes seemed vacant, though he still smiled. He didn’t move the way he should have been moving.

I remember his first birthday sitting at McDonald’s, him in a highchair with pillows propped up so he could see because his mobility was lacking and how hard he cried when everyone started singing. It was too loud and the place was too noisy for him.

I was no stranger to a brain injury or the effects caused by one.

In dealing with my husband day to day it’s all around me. The lack of emotion. The inability to comprehend feelings and remember anything.

I am a strong woman. I had been through my fair share of past ghosts and demons. I could handle anything they threw at me.

At least that is what I told myself each and every time we left Children’s Hospital, only to be rescheduled for another visit with another department. (Metabolic, Endocrinology, Orthopedics).

I can still hear the words as they came tumbling from the neurologists lips.

“Your son is recovering from a brain injury. He has Cerebral Palsy…”

“He doesn’t look like he has CP…” Everyone says when they meet this bright eyed three year who runs and plays like everyone else. We are lucky. It’s only mild.

Except he doesn’t — run and play like everyone else.

Each night he comes in — it begins.

Heat on the legs and the tears that follow — especially if he’s been playing hard with the other kids outside.

Cerebral (meaning brain) and Palsy (meaning affecting his legs) is the best way I can describe it when someone points out just how normal Trace is.

Most days he’s good.

Most days he pushes himself and it’s amazing to think he only started walking a year and a half ago, just before his second birthday.

He doesn’t wear braces and we consider that lucky. Sure it took him until this year to learn how to climb and jump, but that’s okay.

He’s alive and he’s happy.

But he also lives in his own world.

You see on top of his Cerebral Palsy, Trace also has Asperger’s Disorder or so the doctor thinks. It’s one of the milder pervasive developmental disorders (PDDs) on the autism spectrum.

We do not know how severe the disorder is concerning Trace as he has yet to be diagnosed. In fact we just put him on the waiting list (which can take) six months up to a year to wait before we find out. But with Kindergarten fast approaching, it’s needed.

What we do know is that dealing with his special needs doesn’t change that we love him. Just how we love him.

Trace socializes with other in a group setting – but needs to be frequently told to share toys and reminded what appropriate behavior is when he becomes angry.

He’s tenacious when it comes to wanting something. Some call it stubborn. Child Development calls it’s brazenly focused (GOD BLESS) them.

He doesn’t always pick up on facial cues or body language.

He doesn’t understand body space. “I want to hug you…” he will repeat over and over and over, even during inappropriate times when space is needed or wanted from someone else.

He never gives up.

He can become aggressive, too.

He’s almost five now yes, and just learning what is appropriate and inappropriate behavior can be difficult for any child this age. But for Trace it’s even harder. There are four main reasons to Trace’s thinking and feeling when he acts out in ways that others may see as being spoiled, a bad child, poor parenting (on our part) or just a troublemaker.

1. To avoid something – He can become aggressive and shout if things don’t go according to how he thinks or feels or if he doesn’t want to deal with what someone wants to tell him because he’s disconnected from the emotion entirely.

2. To get something – He may lash out at another child because they are playing with a toy he played with (whether it’s a week ago or yesterday) that is his toy and he doesn’t quite understand the concept of sharing items or space. This can lead to biting, hitting, slapping, screaming and punching.

3. Because he’s in pain – He may show a range of challenging behaviors to us or other people because he feels physical pain (such as with his legs) or when he’s sick.

4. To fulfill a sensory need – He may lash out or shout if we are in an environment that becomes too noisy, too busy, too hot, too cold, or strong in a particular sense of smell or feel to him.

He’s in his own world and reaching him isn’t always easy.

A typical day…

Time for school (which he enjoys). Trace goes to preschool. It’s a fine arts school that works with children with a variety of disabilities and his teacher Mrs. Marilyn and Kathy from Child Development work with Trace on teaching behavioral modification and socializing skills that he needs.

He refuses to eat breakfast, like he does every morning until I convinced him a vanilla pudding would hit the spot, followed with a fruit snack before he hops into the car with daddy, his knapsack in his hand because he refuses to allow anyone else to carry it or touch it. ~ This improving.

9:00 to 11:30 Monday to Friday is my only sense of peace while he’s away, and yet I miss him when he goes – go figure and can’t wait to see him barreling through the door with his new piece of work he’s done in art therapy or new song he’s learned during music time.

If it is rainy like today or he’s sick with a cold it can be challenging. Though he’s learning how to accept no for an answer (most days).

Trace loves to play outside, despite the problems with his legs; he is no stranger to pain and will take it when and wherever he can, just so long as it revolves around playing with his older brother and friends and running. His orthodics help him some but we know come bath time he will just lay there and soak his legs for an hour.

* He definitely knows himself and his limits.

He will ask thirty nine times if he can go outside and have several melt downs which can involve hitting me, throwing himself on the floor, crying or spitting, screaming. His newest form of expression is to tell me how much he hates me and that he’s angry and bawl his hands into fists with the look of death upon his face at me.

It’s fun!

Then we have lunch…

JJ gets home at 2:30 and Trace can’t wait to see him. Though has a hard time understanding why his brother has homework and gets mad at me because I make JJ do it before going out to play.

I use catch phrases a lot!  Like “Over said with done” when the topic is no longer up for discussion and make Trace repeat it. I try to keep him focused or turn his focus to other things. But the pushing for things can be tedious and never ending.

Trace wants to the dishes. He gets a chair, despite me telling him there are no dishes to do. Another melt down and he throws a fit. Again hitting. We take a time out together and talk briefly on why hitting is wrong. He will actually tell me he’s sorry now and for what.

Nana (my mother) suggests he help mommy make supper. The distraction works wonders for a short period of time and so we cooked supper together.

Thanks mom.

Standing on the chair; he helped me pour his doodle bops (alphagetti) into the pot and stirred while he waited for it. When it was ready he sat down at the table.

A few moments later he was covered in it because he threw it across the table. It wasn’t cold enough and another melt down, followed by tears and I’m sorry mommy with no expression on his face. We cleaned up and began to spin, clapping our hands to make it through before another emotional fit broke in.

* spinning works for Trace as a distraction and as a calming effect when his senses are overloaded.

Bath time comes and it’s time for us to soak our legs.

Bruised and battered his poor legs, he points out the marks. Telling me how he got each one. He tells me he loves me now when he wants. He hugs me when he wants more than before.  He asks all the time why he falls so much. We talk about it.  Most days he rarely cries when he falls, since his balance isn’t always great. He is used to it.

He uses the stretches Evette his physiotherapist taught him from Child Development. Flex the toes… then the feet, stretch them out and relax. He even breaths, it’s cute.

Done with the bath we get out and begin our settle down time.

“When is daddy coming home?”  he will ask for the hundredth time. Daddy is at volleyball and Trace will just walk up and hit his brother or me, taking cheap shots and then look at us.

“I know another time out.”

He knows it’s wrong and yet continues to do it.

He cries for daddy.

All this leads to more spinning and clapping…

* Trace loves to sing songs.

In fact he loves music of any kind and will be starting guitar lessons this month. He is very excited. My uncle is going to teach him. Another challenge well worth going through but one well worth it.

Ten o’clock arrives and we are still fighting bedtime, though this is improving.

We went through six beds in the past year and ended up giving them all away or selling them. Too hard, too soft, not enough room, too much room. You name it.

We ended up putting his bed in the closet, taking off the doors and suddenly sleep came easier. He just needed to be confined in a smaller space.

Sometimes he gets up and sleeps on the sofa downstairs some nights. Sometimes in our room, but he doesn’t sleep well if he does. Mostly it’s the sofa. We don’t know why. He likes the feel of it I suppose. Finally asleep he will sleep straight through the night until morning usually unless nightmares or leg pain invade his dreams.

He is getting used to his big boy bed and now shares a room with his older brother. It helps — most of the time.

I sit and watch him.

I sit and sometimes I cry.

I don’t cry because he’s different. I don’t cry because he’s got disabilities or challenges. I cry because loving Trace is a challenge and it takes all I have each and every day to try to reach him. God… how badly I wish I could reach him some days.

My arms are open wide and my heart hangs by thread when I see him play and try to talk to him but there is no answer, no-one listening, only repetitive talking on the subject he wants to discuss over and over – until he’s ready to hug or acknowledge we are there.

We are there.

It’s a long journey dealing with Asperger’s and Cerebral Palsy and it’s one I never asked for or counted on when I had Trace. But it’s one I am not ashamed to travel through either.

I love Trace more than anything in the world.

He’s my baby.

My little man.

My pickleboy.

My angel and each day is a challenge. Each milestone a blessing. With every bad day there is a good one in between somewhere. Stolen moments of priceless effort and harmony (even if briefly). Trace just has the ability to bring the best out in your and the worst at the same time. That’s talent in my books.

“So daddy heard you weren’t a good boy for mommy while daddy was gone. How come?”

“I played with this doll.”

“Trace, why weren’t you a good boy for mommy?”

“I played with it’s hair.” His eyes focus on the blue hair upon the treasure troll some man willingly handed to him at the swap fair for kids.

“Trace?”

“Yes?” Not looking at either of us.

“When are you going to be a better boy for mommy?”

He glances over at me, walks up to me and gives me a big hug and whispers in my ear. “Saturday, k mom. On Saturday.”

Saturday is how Trace always answers hard questions he wishes to avoid or cannot cope to answer and both my husband and I smile. Trace was born on a Saturday, so it only makes sense.

I’m truly blessed not because Trace is my son.

I’m truly blessed — because I was chosen to be his mother.

Note to readers: If you made it down to the bottom of the page I thank you so much. This was a really long post and I appreciate you taking the time to read it.