Priceless Perspectives in Autism Parenting

What a wonderful day in PA!

I am posting my notes from today (extra material that I didn’t get to in the speech is included) because I had a few requests for references, book titles and such.

For those of you who posed for the picture after the event, Autism File Magazine will be running it and putting it into their final video (here is the work in progress as of March) Here is one of the happy ones:

PA Autism Moms

Thank you so much, my sisters, for allowing me to be a part of your wonderful day.

Priceless Perspectives in Autism Parenting

WHAT AUTISM IS

At this point we cannot even agree yet what autism actually is.

Autism has been called a puzzle, a mystery, a neurological disorder, a whole body medical syndrome, communication disorder, a social deficit, a behavior problem, an alternate cognition …. Autism has been called a blessing and it has been called a curse.

We are beginning to come out of the darkness on what ‘autism’ is, but clearly, we have a LONG way to go.

For my purposes today, instead of looking at what autism is, I want us to look at what autism does and what it can do. Not only in our children, but most specifically, in us, those who love and care for children diagnosed with “autism”.

WHAT AUTISM DOES

There are plenty of glass half full autism mom’s who can earnestly say that autism is a blessing and God bless those women. I just am not one of them. Now please understand, my son Chandler possesses super human cuteness and perhaps either despite or because of his autism, an irritable pull to most people especially of the female persuasion. He is a truly wonderful guy, and after many years of work, a much happier, healthier and more functional guy than he was when we started the autism journey 5 years ago.

But despite all that is so right with him, despite the fact that his speech delay even makes him pretty adorable, despite any special talents that it may have brought into his life, I can never call autism a blessing for these two simple reasons:

1. Because it separates me from my son.
2. Because it puts him in danger.

AUTISM SEPARATES ME FROM MY SON

Let me address both. First, there is a biological imperative sown into our mommy DNA that compels us to bond with our children. I am referring to that basic human desire to know, and be known by, our children. It shows itself loud and clear in nearly every facet of mother/child interactions, even the most dysfunctional ones, it is constantly explored in our art, film and even exploited in our commercials (buy your kid a cell phone and he will call you!) and when we come across the exceptions to this rule, mothers who can neglect, abandon, abuse or even kill their own children, we are physically disturbed and horrified by it.

18 months into my journey to know and by known by my beautiful read headed boy, to communicate my love for him, to teach him my values and the wisdom I have gained, to learn what interests and excites him, to be a partner with him in launching his life, a giant curtain called “autism” came crashing down in between us and cut me off from my baby, thwarting the plans that I had for the two of us since I began to anticipate motherhood as a girl more than two decades before.

Autism broke my heart.

And the next day I began trying to figure out how I could get rid of this thing that had come between us and it has been a large part of my focus for the last five years. I have come to learn that Chandler’s autism is not so much one thick curtain, but a thousand veils between us. When we figure out one piece of his ‘autism’ puzzle, a veil or two or ten lift. We can get a clearer view of one another and the celebrations ensue. When he looked me in the eye again, when he called me “Mommy” again after 10 months of not speaking that word, when he asked me for an apple because he was hungry, the first time he sought me out for a hug and nothing else, the fist time he looked at me and told me I was pretty, the first time he told me a joke, the first time he showed concern for me when I was crying, the first time he told me what he did at school were all big days in our home because the curtain was getting thinner and thinner. Chandler and I are becoming closer and closer as time goes on and we will keep working to get rid of as many of those veils as we possibly can.

AUTISM PUTS MY SON IN DANGER

But setting aside my own needs to be able to be close to my son, I come to my second point, the bottom line in my ‘autism is bad’ argument is that it puts my son in danger.

All of the special talents, insights and experiences that autism may have given him are not worth his life. He does not have the healthy sense of danger that his brother has, and stories of the risk that he has posed to himself are far too many to recount here, but I will share one.

Chandler is an eloper and despite increasing security measures over the years, he has still managed to get out a few times. The most upsetting occasion was when Scott and I were both working at our desks, thinking Chandler was in the play room. That is until we heard the voice of a police officer in our hallway checking to see if the open door to our house had anything to do with the confusing five year old in his squad car that the Verizon guy found two blocks away. We had forgotten to lock one lock, and he figured out the other one, and we never knew he was gone.

The danger autism poses to our son was most horribly demonstrated to us last year. A month from now will be the one year anniversary of the death of one of Chandler’s classmates, a beautiful little girl named Ashley Brock who lost her life in their neighbors pool (despite good security measures and months of swimming lessons) simply because a gate didn’t relatch completely after a guest had come through. Grieving with Ashley’s family was painful, not just for their loss, but because we knew full well that we had already dodged that bullet numerous times and that even with our heightened vigilance, in all likelihood we would be facing the threat it again.

Autism makes our children vulnerable.

ANCHORING OURSELVS TO OUR CHILDREN WITH AUTISM

Their vulnerability to the world’s slings and arrows of outrageous fortune becomes a huge problem because of the simple fact that we love them so much!

So when an autism diagnosis comes, are faced with a choice. To continue the status quo in our lives, pursuing the things we have always pursued, or to make a dramatic shift and begin to pour our resources into our children in the hopes that we can give them the best chance we can at a healthy, safe, fulfilled, functional, independent life.

And the thing about us autism moms, we rarely make the former choice. Because we love our kids.

So we take a hard turn off what ever course our energies were invested in and we anchor ourselves to our vulnerable children.

And if you have been an autism mom for more than a year or so, you have already begun to experience the lack of value that much of the world has placed on our special kids. You have probably already had that shocking realization after dealing with a school system official or doctor who is not listening or impatient teacher or heartless state bureaucrat that some people just cannot be bothered with treating our children with dignity or respecting their rights.

And those are the people whose obligation to special needs kids are written into their job descriptions, ethical standards and the laws of the land. Nevermind the scores of unsympathetic flight attendants, waiters, security guards, checkout girls, school mates, snobby PTA mom’s and opportunistic employers that are out in the world seemingly plotting to make your child’s life harder.

One of the things that autism does, is that Autism Brings Grief.

And I have not begun to touch on the rest of the difficult things that it has brought into our lives, frustrated plans, broken relationships, empty bank accounts and ended careers, social isolation and homebound lives, broken down bodies and emergency room visits, sleepless nights and tears, tears and more tears.

So I am here today to speak to those who are struggling because of autism. If that is not you right now, then I offer this to you for the day that autism brings you one of those unexpected sucker punches to the gut that it does so well.

Because all of that grief, that loss and sorrow and suffering, can do something quite miraculous in the lives of those who love and serve people with autism. It can wake us up, make us serious, point us toward what is real and what is valuable, and it can teach us things about God that we may never have been able to really understand had He not chosen us to be the ones to fall in love with a child with autism.

To choose to set yourself aside and serve a child with autism is to anchor yourself to ‘the vulnerable’. Our kids are vulnerable, no two ways about it. When we become their defenders, we stand in front of them and take the hits that were meant for them. When we physically protect them from injuring themselves, sometimes we end up in the emergency room. When we bear their emotional burden of not having friends, we feel their pain, sometimes as intensely as they do. When we spend our retirement money getting the best treatment and services we can afford, we decrease their chance of having to live in an institution by increasing our chance of having to one day live in an institution. When we pour our limited resources into the bottomless pit called autism, we choose to make ourselves poor.

And when we do that, we become the people that God came for when He humbled Himself, put on flesh and came to earth.

When Jesus began his public ministry He said this:

Luke 4:16-20
And he came to Nazareth, where he had been brought up. And as was his custom, he went to the synagogue on the Sabbath day, and he stood up to read.

And the scroll of the prophet Isaiah was given to him. He unrolled the scroll and found the place where it was written,

“The Spirit of the Lord is upon me,
because he has anointed me
to proclaim good news to the poor.
He has sent me to proclaim liberty to the captives
and recovering of sight to the blind,
to set at liberty those who are oppressed,
to proclaim the year of the Lord’s favor.”
And he rolled up the scroll and gave it back to the attendant and sat down. And the eyes of all in the synagogue were fixed on him. And he began to say to them, “Today this Scripture has been fulfilled in your hearing.”

Most of us are educated, middle class, Americans, and have lived better than the vast majority of people in the history of the world. Had autism not entered our lives, would we be ‘the poor’?

During a particularly hard time I had the history channel on while I was working on something and there was an archaeologist reading ancient Hebrew carved into the wall of an underground cave written by a jewish slave who probably spent most of his time there digging out stone for his Egyptian slaveholders. It read “God, please don’t forget me down here”.

When he read it began to cry and pray the same thing. There is not a chance that 10 years ago I would have identified in any way with a slave trapped underground.

Because we are the people he came to reach out to we have chances to understand things that few people do, and become what we may have never become otherwise.

THE CHANCE TO BECOME MATURE

We live in a country and in an age in which there has been such prosperity that the age of ‘adolescence’ can be extended well beyond the teen years, and in many cases, can go on indefinitely. I have witnessed this occur in abundance living in Los Angeles for ten years. In this country, if you don’t want to grow up, you really don’t have to.

But God has done a great kindness to those of us who have experienced grief in being an autism parent. We have not been allowed to linger in la la land in the way we might have had we been allowed to.

Through hardship He has forced us to make a decision as to whom we would serve, ourselves and our whims and our ambitions and our needs, or the needs of a child who would often not only likely never know what our service to them cost us, but may never be able to repay or acknowledge it in even the slightest sense.

All parents have to make this choice, but for those with typical children, the cost is not as high and the material rewards are often far greater. Some autism moms will serve a lifetime and never be rewarded with hearing their child say, “I love you, mommy”. Some autism dads will slave away at a job that they hate to provide for their child and yet never hear an excited, “Daddy’s home” at the end of their day. But they will chose to do it again and again, day after day, because their love for their child makes this hard choice for them.

God has given us the chance to grow up. He has shown us now unimportant and frivolous so many of our pursuits were before autism.

And if we make the choice to grow up, to stop running from suffering and sorrow and hardship and grief, but to walk through it, embrace it and humble ourselves and be taught by it, we open ourselves up to a whole new message from God that we may never have been able to ‘get’ if we had been on any other path.

Two of the best portraits of maturity in scripture:

Job: God’s Man in Uz
God bragged about him to Satan
God allowed him to be struck for His own purposes
Job responded with grieving and worship.
Satan again taunted God and God allowed him to take everything but Job’s life.
Job finally cracked and basically said, if you were going to do this to me, you never should have let me be born.

God’s sermon response was the hard one. “Who are you to teach Me?”

And Job responded with humility and honored God.

And Job was rewarded with more than he had before.

Christ in the Garden:
Matthew 26:
Then Jesus came with them to a place called Gethsemane, and said to His disciples, “Sit here while I go over there and pray.”
And He took with Him Peter and the two sons of Zebedee, and began to be grieved and distressed.
Then He said to them, “My soul is deeply grieved, to the point of death; remain here and keep watch with Me.”
And Father, if it is possible, let this cup pass from Me; yet not as I will, but as You will.”
And He came to the disciples and found them sleeping, and said to Peter, “So, you men could not keep watch with Me for one hour?
Keep watching and praying that you may not enter into temptation; the spirit is willing, but the flesh is weak.”
He went away again a second time and prayed, saying, “My Father, if this cannot pass away unless I drink it, Your will be done.”
Again He came and found them sleeping, for their eyes were heavy.
And He left them again, and went away and prayed a third time, saying the same thing once more.
Then He came to the disciples and said to them, “Are you still sleeping and resting? Behold, the hour is at hand and the Son of Man is being betrayed into the hands of sinners.
“Get up, let us be going; behold, the one who betrays Me is at hand!”
On your own, read the rest of the 26, 27 and 28. Jesus boldness during his arrest, faux trial, sentencing, torture and crucifixion. His strength during the hard time that counted was because he was broken before God in the garden before hand.

The pinnacle of maturity that was that displayed in these two men can be summed up in their painful choice to say, “Not my will, but Thy will” no matter how painful God’s will was for them. No matter what it cost them.

They were willing to die to themselves and serve God and man.

When we make that decision to follow in Christ’s footsteps, to actually give up our will in life for what God wants and for what is best for others, an amazing phenomenon takes place.

We stop being tossed here and there by the world because we don’t really care what the world dishes out any more. When we become a servant of the God who is in control of the universe, when we love and allow ourselves to be loved by Almighty God, when we turn from all the selfish things that we have done in the past and put ourselves under His protection, amazing things happen:

Wonder Women:

Fear God Only

Romans 8:15
For you have not received a spirit of slavery leading to fear again, but you have received a spirit of adoption as sons by which we cry out, “Abba! Father!”

Psalm 145:19
He will fulfill the desire of those who fear Him; He will also hear their cry and will save them.

2 Timothy 1:7
For God has not given us a spirit of fear, but of power and love and of a sound mind.

Psalm 118:6
The Lord is for me; I will not fear; what can man do to me?

Psalm 27:1
The Lord is my light and my salvation; whom shall I fear?
The Lord is the defense of my life; whom shall I dread?

Job 4:6
Is not your fear of God your confidence and the integrity of your ways your hope?

Isaiah 41:10
Do not fear for I am with you.
Do not anxiously look about, you for I am your God.
I will strengthen you, surely I will help you,
Surely I will uphold you with my righteous right hand.

Philippians 4:6
Be anxious for nothing, but in everything, by prayer and supplication, with thanksgiving, let your requests be made known to God. And the peace of God, which passes all understanding, will guard your hearts and minds in Christ Jesus.

Philippians 1:27-28
Only conduct yourselves in a manner worthy of the gospel of Christ, so that whether I come and see you or remain absent, I will hear of you that you are standing firm in one spirit, with one mind striving together for the faith of the gospel; in no way alarmed by your opponents—which is a sign of destruction for them, but of salvation for you, and that too, from God.

Repent

Numbers 5:5-8
Then the LORD spoke to Moses, saying,
Speak to the sons of Israel, ‘When a man or woman commits any of the sins of mankind, acting unfaithfully against the LORD, and that person is guilty,
then he shall confess his sins which he has committed, and he shall make restitution in full for his wrong and add to it one-fifth of it, and give it to him whom he has wronged.
Or
1. Stop what you are doing.
2. Say what you did wrong
3. Clean up your mess plus a little.
How many women here can think of someone who harmed your child simply because they would not follow these basic principles?
How many women here, because they have seen the destruction that pride that prevents repentance can cause, do not want to be like that person?
Can Forgive
The bible paints a picture of the transaction of repentance and forgiveness. When we are humble, and repentance begins to come easily for us, we realize, with out panic, that we screw up a lot! And that recognition that we are so flawed gives us the humility to forgive, from our hearts, those who have wronged us and our children. (All the while holding them accountable).

Tend His Sheep

John 21:15-22
So when they had finished breakfast, Jesus said to Simon Peter, “Simon, son of John, do you love Me more than these?” He said to Him, “Yes, Lord; you know that I love You”. He said to Him, “Tend My lambs.”
He said to him again a second time, “Simon, son of John, do you love Me?” He said to Him, “Yes, Lord; You know that I love You.” He said to him, “Shepherd My sheep.”
He said to him the third time, “Simon, Son of John, do you love Me?” Peter was grieved because He said to him the third time, “Do you love Me?” And he said to Him, “Lord, You know all things; you know that I love You”. Jesus said to him, “Tend My sheep.”

Proverbs 30:8-9
Open your mouth for the mute,
for the rights of all the unfortunate.
Open your mouth, judge righteously,
defend the rights of the afflicted and needy.

Are No Longer Children
As a result, we are no longer to be children, tossed here and there by waves and carried about by every wind of doctrine, by the trickery of men, by craftiness in deceitful scheming; but speaking the truth in love, we are to grow up in all aspects into Him who is the head, even Christ,

Sharpen One Another
Proverbs 27:17
Iron sharpens iron, so one man sharpens another.
More than any other community, ours understands what it means to dispense with the top down informational authority structure, roll up our sleeves and get to work researching and teaching one another.
What would it be like if just the women in this room decided to go through that process of giving up what they fear in the world, give up what they want and served and feared God only? Teaching, and training one another in what they each knew, encouraging and holding each other up?

Accept Correction

Proverbs 1:7-9
The fear of the Lord is the beginning of knowledge, but fools despise wisdom and discipline.
Listen, my son, to your father’s instruction and do not forsake your mother’s teaching.
The will be a garland to grace your head and a chain to adorn your neck.
Turn to my reproof, behold, I will pour out my spirit on you; I will make my words known to you.

Proverbs 3:11
My son, do not reject the discipline of the Lord or loathe His reproof, for whom the Lord loves he reproves. Even as a father corrects the son in whom he delights.

Proverbs 16:18
Pride goes before destruction and a haughty spirit before stumbling.

So consider these two seemingly opposite pictures of a woman, one grieving and one mature. One afraid and one fearless.

And consider this story:

Hind’s Feet on High Places

Much Afraid had to embrace “sorrow and suffering” in order to make it to the High Places with God. And to finally enter in, she had to give up her will.

God has done us a great kindness by unmooring us to a large extent from this world. Autism exposes all the yuckyness, the product of the selfishness of the sin of man. It also exposes all of our selfishness, because the better I get at serving Chandler, the worse I realize I am.

Matthew 25:31-46 – “What you do to the least of these, you do unto me”.

I can’t even get my butt off the couch to give Jesus a hot dog.

THE MOST PRICELESS PERSPECTIVE IN AUTISM PARENTING:
THE CHANCE TO STAND IN GOD’S SHOES

But there is an ultimate kindness that God does for us in making us autism moms and that is that he give us a peek into what it is like to be Him.

So for a minute, put yourself in His place.

Because the story of the relationship between God and man is the story of the relationship between a parent and a child with regressive autism.

God made us to know, and be known by, Him. And that story got off to a great start. God and his children were in the Garden of Eden, in perfect communication with one another. God communicating his love for them, teaching them His values and the wisdom He had, learning what interested and excited them and being partners in launching life in this world. And then a giant curtain we call “original sin” came crashing down between them, cutting Him off from his children.

His children were no longer able to hear him, process his messages, and have free exchange with Him. Messages that before may have been received immediately suddenly took repeating a hundred times before they got through, and even if they finally did, they may not have been retained for long and needed to be constantly refreshed. They could not longer understand the danger that they were entering into despite his constant warnings. They couldn’t be obedient to his instruction because of the strength of pull of their impulses. They could not hear his voice above all of the noise and distraction of the world around them.

And yet, He has never given up on them. The Old Testament is the story of ABA. Of repeatedly calling His children back to Himself and His instruction for their good. And the story of Christ is the story of God finally coming down, pouring his resources out on his children, anchoring Himself to the most vulnerable and taking all the hits that were coming their way. One of the names for Christ is Our Advocate.

There was no limit to what Christ was willing to sacrifice for the chance to get his children back, to again be in union with them, to know and be known by them, because His love for His children made His choice for him.

Not only is there a God who “gets” you, He has given you a very unique opportunity to “get” him.

Matthew 23:37
Jerusalem, Jerusalem, who kills the prophets and stones those who are sent to her! How often I wanted to gather your children together, the way a hen gathers her chicks under her wings, and you were unwilling.

Tim Keller:
“One of the great themes of the Hebrew Scriptures is that God identifies with the suffering. There are all these great texts that say things like this: If you oppress the poor, you oppress to me. I am a husband to the widow. I am father to the fatherless. I think the texts are saying God binds up his heart so closely with suffering people that he interprets any move against them as a move against him. This is powerful stuff! But Christianity says he goes even beyond that. Christians believe that in Jesus, God’s son, divinity became vulnerable to and involved in – suffering and death! He didn’t come as a general or emperor. He came as a carpenter. He was born in a manger, no room in the inn.
But it is on the Cross that we see the ultimate wonder. On the cross we sufferers finally see, to our shock that God now knows too what it is to lose a loved one in an unjust attack. And so you see what this means? John Stott puts it this way. John Stott wrote: “I could never myself believe in God if it were not for the Cross. In the real world of pain, how could one worship a God who was immune to it?” Do you see what this means? Yes, we don’t know the reason God allows evil and suffering to continue, but we know what the reason isn’t, what it can’t be. It can’t be that he doesn’t love us! It can’t be that he doesn’t care. God so loved us and hates suffering that he was willing to come down and get involved in it.” – Tim Keller
“Jesus was Lynched”
There is no emotional battle that you can go through that he has not already fought. He has painted Himself into your life, and He has painted you into His life.

CHALLENGE TO EMBRACE THE HARDSHIP AND PARTNER WITH CHRIST TO WALK THROUGH IT

It may well be that they only way that God could break down my pride or get my attention or detach me from the world in order to bring me closer to him, was through this hardship.

Hebrews 12
Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.
Do Not Grow Weary
Consider him who endured from sinners such hostility against himself, so that you may not grow weary or) fainthearted. In your struggle against sin you have not yet resisted to the point of shedding your blood. 5And have you forgotten the exhortation that addresses you as sons?

“My son, do not regard lightly the discipline of the Lord,
nor be weary when reproved by him.
For the Lord disciplines the one he loves,
and chastises every son whom he receives.”
It is for discipline that you have to endure. God is treating you as sons. For what son is there whom his father does not discipline? If you are left without discipline, in which all have participated, then you are illegitimate children and not sons. Besides this, we have had earthly fathers who disciplined us and we respected them. Shall we not much more be subject to the Father of spirits and live? For they disciplined us for a short time as it seemed best to them, but he disciplines us for our good, that we may share his holiness. For the moment all discipline seems painful rather than pleasant, but later it yields the peaceful fruit of righteousness to those who have been trained by it.
Therefore lift your drooping hands and strengthen your weak knees, and make straight paths for your feet, so that what is lame may not be put out of joint but rather be healed. Strive for peace with everyone, and for the holiness without which no one will see the Lord. See to it that no one fails to obtain the grace of God; that no “root of bitterness” springs up and causes trouble, and by it many become defiled; that no one is sexually immoral or unholy like Esau, who sold his birthright for a single meal. For you know that afterward, when he desired to inherit the blessing, he was rejected, for he found no chance to repent, though he sought it with tears.

If true, I am sorry that I was so stubborn that it took something this big for me to want to grow up.

As much as I hate autism, I am grateful for the suffering and the richness that it offers me. I hope I don’t waste it.

God has set you down that road to maturity in Christ, to giving up your will, take it all the way.

By no stretch am I Wonder Woman yet, but I am not Much Afraid any more either. By God’s grace I will keep moving forward.

If you have been inspired to go for more then I will leave you with three things:

1. Look around you. God gave you a sorority. Use it.
2. Get a good Bible and read it over all the other things out there.
3. Go to God and ask him what it means to die to yourself.

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Author: Ginger Taylor

I am a thirty something wife of a wonderful man and mother to two beautiful boys. I am a Johns Hopkins educated family therapist with a current case load of one, my autistic son Chandler. I want to God and what He really has to say to us and especially what He really wants from me. I approach Scripture from the Reformed perspective of Luther and Calvin and those that followed them, and encourage lively debate here at Daily Discernment.

4 thoughts on “Priceless Perspectives in Autism Parenting”

  1. Thanks so much for posting this! As I was telling people about the luncheon, I kept saying that I wished I could go back over some of the things you said, so this is aweseome. 🙂

    I shared the link on the local list serve so the other moms who came could see it.

  2. Hello there, Happy Fool’s Day!!!

    Two guys were in a bar, and they were both watching the television when the news came on. It showed a guy on a bridge who was about to jump, obviously suicidal.
    “I’ll bet you $10 he’ll jump,” said the first guy.
    “Bet you $10 he won’t,” said the second guy.
    Then, the guy on the television closed his eyes and threw himself off the bridge. The second guy hands the first guy the money.
    “I can’t take your money,” said the first guy. “I cheated you. The same story was on the five o’clock news.”
    “No, no. Take it,” said the second guy. “I saw the five o’clock news too. I just didn’t think the guy was dumb enough to jump again!”

    Happy April Fool’s Day!

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