What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

Archive for the Category guest posts

 
 

Free Tianze

Tianze

Last year this blog hosted some poetry authored by Tianze, an autistic teenager living in Scotland. I’ve never met him or his parents F2F, but for over ten years have corresponded with his mother Nina. I believe her to be a sweet, caring soul.

Their family is going through some bad times right now.

Developmental disabilities affect kids in various ways. As Tianze has grown older, he has at times been unable to control his emotions and has been destructive.

I guess nobody has an explanation.

But I know it’s not unreasonable to look for explanations.

I subscribe to a daily email list where parents of disabled kids share what they are learning. (In fact, I’ve been getting that kind of info for as long as I’ve had email, going back to the mid-90s.) Before there was email, I got information via other channels, and my memoir shows that answers can indeed sometimes be found.

Currently, a lot of people in those emails happen to be discussing how to deal with symptoms like Tianze’s. It is understood that the cause exists on a cellular/biochemical level. And there’s general agreement that finding the right treatment for any given kid involves trial and error—ranging from diet supplementation (e.g., “people have a higher demand for folate from ages 12 to 20”) all the way up to prescription meds. Whatever the magic combination may be, some people do discover it, and post reports such as, “he’s gone from a holy terror to the sweetest, most consistent boy imaginable.”

I would like to suggest that incarcerating a disabled kid, against his will and his family’s will, is likely to do more harm than good. It strikes me as an ignorant response, even in the context of the ignorance we all share.

Now, I understand the motive of wanting to protect someone from himself, or maybe temporarily offering someone a change of scenery. But for five months Tianze has been kept in a medical facility far from his home. Originally, the stay was only for “assessment.” Somehow, it appears to have become indefinite.

He doesn’t want to be there.

His parents don’t want him there.

Nina recently started an online petition: Bring my autistic son, Tianze, back home to Scotland. I hope you will sign it.

Because what she has written below gives a pretty clear idea of how this hospital stay is working out.

I mention above the role trial and error plays in finding answers. That means if an intervention is clearly not working, there’s no justification for persisting in it.

My son like a lion locked in the cage outbursts suddenly: “It is too long in this ward”

I’m again heartbroken visit today.

When I met Tianze, I saw his hair is too long nearly cover his eyes again. I knew I had lots of chase in last time regarding haircut issue, finally the hospital done it. But now it is too long again. We brought lots of Tianze’s favourite toys to him, especially his black toy dog. He holds it and kisses the dog and feel happy about all the toys we brought to him. I knew he had bad week because of missing home, I checked his arms which are full of bite marks. But before hospital, there are no bite marks on his arms. He can be agitated at home, but he is still a happy boy at home.

When our visiting time carried on about 5-7 minutes, Tianze started outburst suddenly, He looked like a lion locked in a cage and suddenly screamed: “It is too long here in this ward.” Then Tianze just started to bite his arm. He pulled the curtain down. He was pulled away by staff back to his ward immediately. We just had this 5-10 minutes visiting time.

I’m heart broke now. . .
Tianze—My poor boy . . .
Mum knows you need home,
You need Mum’s love,
You need Dad’s love. . .
I need my child back home ASAP.
My son suffering, We are suffering. . .

Tianze—My dear son,
Mum knows you have your rights to go to parks,
like all other children
Mum knows
You have your rights to back home,
Like all other children.
You should have your freedom,
You shouldn’t be locked here such long time,
Drugs can’t solve everything,
You need Mum’s love. . .
You are Mum’s baby forever.

Tianze—My dear Son,
You had relatively calm time in hospital,
You waked up every early morning to
just count how many days left in hospital. . .
You sing back home song daily to mum. . .
But now you may lose hope,
you can’t wait,
What you can do now is just
hurt yourself and hurt yourself. . .

Tianze—My dear son,
Mum is helping you out of hospital now,
please stay calm and calm
Please wait Mum and wait Mum. . .
My son, Mum will let you back home,
That is your home,
that is our happy home. . .
Nobody should deprive it. . .
We live in modern society. . .
We live in a civilized country. . .

Tianze—My dear son,
Mum knew you are autism,
you can’t understand lots. . .
You can’t wait any more
even a normal child will be frustrated if locked in without family love. . .
But please can you wait mum,
Mum will save you from this prison. . .
Mum will try best to save you

Poems by Tianze Ni

opposites

Tianze Ni is the son of a Chinese friend who lives in the UK. Several months ago, his mom Nina allowed me to share a heartbreaking poem she’d written, a very frank exploration of her experience of raising, and loving, an autistic child.

We adults are certainly entitled to our feelings, opinions, hopes, etc. I have made mine known. But I’ve always wished it were possible to know more about the view from the other side. How do disabled kids see things? What does life mean for them?

That’s why I titled my memoir What About the Boy?, and it’s why I was glad to feature a book of artwork created by another disabled boy. And for the same reason I’m more than happy now to share the following creations penned by Tianze:

The Sun and the Moon
25th July 2013

Sun, Sun like a good boy.
Moon, Moon like a good girl.
Wait till day light,
Then the Moon will become a good boy.
Wait till day dark,
Then the Sun will become a good lady.
Odd numbers like even numbers,
Sun loves the Moon…
Moon love the Sun.
Boys love the girls.
Girls love the boys.

 

Summer time song
15th July 2013

Sun set, sun set, sun set
Beautiful, beautiful sun set.
It is dark red now,
The clock straight toward 9 PM
The sun cuts its head off…

Moon rise, moon rise moon rise now
Beautiful, beautiful moon rise.
It is dark blue now,
The clock straight toward 9:10 PM.
The Moon puts its head on…

Sun rise, sun rise, sun rise now
Beautiful, beautiful sun rise.
It is white colour now,
The clock straight toward 5 AM.
The sun puts its head on again.

If you are upset
28th July 2013

If you are upset, upset,
Just wait and wait,
Till dream and dream
And wake up.
You will be happy again…
happy again

If you are happy, and happy,
Clap your hand.
More happy you will have.

If you are sad and sad,
Just wait and wait
Till dream and a good dream
And dream…
Day will light again.

 

Dance in the moonlight
1st August 2013

I like dance and dance in the moonlight
I would take you down at any more…
Dream, dream, wake up,
Day light, day light now
Happy and happy again…

I like dance and dance in the moonlight
I would take you down at any more…
Dream, dream, wake up,
Happy and happy again…
Car goes to high way
It would no more tummy sore…

I like dance and dance in the moonlight
I would take you down at any more…
Dream, dream, wake up,
Happy and happy again…
Car back to home,
It would no more tummy sore…

Sun Rise and Sun Set Song

21st September 2013

Sun rise, sun set,
Sun set, sun rise,
It looks like a switch,
on and off,
Off and on again and again.

I enjoy to play the switch, on and off,
off and on. . .
It looks like playing sun rise and sun set.
It looks like playing the time.

What things make sun set?
Where is the sun sleeps?
It is earth turn around,
It is jesus’ hand switch on and off.

   Lamp Post Song

1st November 2013

Lamp post, lamp post,
It turns off in the day light;
It turns on in the day dark.
It looks like a sun that shines in the darkness.

When I lay down in the sofa,
From home window,
I see lamp post on.
It gives me warm, hope and lights.
It gives me sunshine evening.

NiuNiu