Thursday, June 4, 2015

Dreaming For My Autistic Son

Hello. I'm Mark, and I'm an autism dad.

Today, my son's development pediatrician looked me in the eye and told me that my son is getting worse. He's losing skills on some areas, and he's not developing fast enough on other areas.


No, he said it tactfully. He was straight-forward, humane, far from being impolite. I think he genuinely cares about Mito. This isn't a post that defends a child with special needs from people who don't believe in them. This isn't a post about the triumph of an autistic child over his issues. This is not that kind of post.


Mito has been diagnosed with autism two and a half years ago. Since then, we have not stopped providing him with the interventions he needs. Right now, he has a two-hour, five-days-a-week Applied Behavioral Analysis (ABA) sessions, and twice a week sessions of Occupational Therapy, Speech Therapy, and Physical Therapy. Just this week, we also started him on Oral Placement Therapy. We spend about $1000 per month for his therapies alone -- more than twice the minimum monthly wage in the city. We also recently started him on a gluten-free and casein-free (GFCF) diet to supplement his interventions. We understand it's not a universally accepted treatment method yet, but if it doesn't harm and it has a chance of helping our son, we're more than willing to give it a try.

He has a dedicated yaya, and his grandmother is kind enough to be with him everyday and bring him to his therapies. My wife and I both work, but he is nonetheless showered with attention, love, and intimacy when we're at home. In terms of support, the family is all-hands on deck for him.

And yet, he is not developing.

My wife and I are Christians. Every night, we pray with our little boy and ask the Master Of The Universe to grant us the strength and the resources to support the special needs of our son, and if possible - if He wills it - to grant us the miracle of our baby overcoming this issue. This is our second most fervent invocation -- behind only the prayer that he grows up loving God above all.

So far, the heavens have been silent.

But that is ok. This is not a post raging against God. My wife and I understand the truth of sovereignty. We trust not only in His goodness and in His wisdom, but also in His compassion. My wife and I know deep in our bones that if we are pained by the struggles of our son, God weeps with us. This is a fallen world, and part of that brokenness is the reality that even the sweetest little boys may have afflictions that may hound them for life. This is not a post about that.

This is a post about my failure.

As a father, I understand that I have four major tasks with regard to my son:
  • To show him through my life and my words how to love the Lord and follow His ways.
  • To bestow masculinity; to teach him real strength; to love his mother
  • To protect him from harm
  • To empower his dreams

Like all humans still earthbound, I am a work in progress. The first task is something I wrestle with God every day. He is grace-full, and I'm keeping my hands open.

On the second item, my wife suffers through my blunders. But she is a child of her Father -- hence, she is also a creature of grace, and thus, stands by me despite my failures.

We do ok on the third item.

On the fourth... I must admit that I am lost. What dreams may I carry for my son? What hope should I carry for his future? Will he learn how to do simple arithmetic? Will he learn how to read? Will I ever get the chance to share my stories with him?

Will he ever get to know me?

I always tease my wife that if my son doesn't get accepted in UP for college, there is only one acceptable alternative: PMA. She rails against it because she can't imagine sending her only boy in harm's way. It's a joke -- because I know I'd get a rise out of her, and because in all honesty, there's no guarantee Mito would ever go to college.

And there lies my failure. I don't know how to prepare my son for a future where I am unsure of how he can take care of himself. I don't know how to dream of a wife and a family for him because I can't see yet how he'll protect himself from those who would take advantage. I don't know what to dream for my son.

And maybe there's good in there. Without me forcing my own dreams on him, he will be free to forge his own path, make his own dreams, no matter how unconventional they are. Maybe he'd like to take care of seals in the Arctic, happily freezing in the cold. Maybe he'd want to grow up as a musician, strumming his guitar in a different place every night. Maybe he'd be happy flipping a stop sign while children cross the street; maybe he'd even want to become an actor.

But first, I'd have to teach him that it's ok to dream despite whatever hurdles are in his way. And to never let any guy stop him from going after his dream -- even if that guy is me.

4 comments:

  1. Blessings to you, Mark. I will say a prayer for you this morning.

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    Replies
    1. Thank you, Kevin! Hi to your wife!

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    2. Thank you, Kevin! Hi to your wife!

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    3. Thank you, Kevin! Hi to your wife!

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