Sunday, May 28, 2006

nobody's crying....

I hope that everyone I shared this video clip with will read OUR rest of the story...
I was surprised by how much that video clip bothered me. I was simultenously glad for the insight into the daily challenges that the girls and I faced for the first three - four years of their lives and repulsed by the hopelessness and "pity me" gist of it too.
I can't speak for anyone else and I certainly do not blame the girls for this, but when they were little and tag-teaming me with the endless tantruming all day and most of the night, and I was exhausted, and the a lot of people in my life were blaming me for what was going on or blowing off my tenative concerns with, "Oh, all kids do that," I would have been really thankful to know that I was not a huge f-up and that my kids were not defective and unreachable. That there was an explanation for all the screaming and self-injury and there were things I could do to make our lives more manageable. And that, in fact, all kids did not do what the girls were doing.
On the other hand, from where we are now, the hopeless, helpless, victim angle of this clip really bothers me. Until I read a post about the clip at a blog that is, for lack of a better expression, "Pro-Autism," and many of the subsequent comments, I had been unable to put my finger on just exactly what bothered me so very much. The video paints an entirely incomplete picture of autism, or life on the spectrum in our little corner of dysfunction junction anyway. Whenever the joyful, the unique, and even the mundane experiences of life on the spectrum are left out, it does a huge disservice to my children (I am trying to be careful not to generalize anyone else's experiences) and to society. It cheapens the contributions of people who are on the spectrum and it asks so little of the communities that they live in.
I made a similar comment at the aforementioned blog and afterwards I knew I had to post it, if paraphrased, here.
We've come too far and worked too hard for anything less.

Those who look to him for help will be radiant with joy; no shadow of shame will darken their faces.
I cried out to the LORD in my suffering, and he heard me.
He set me free from all my fears.
Psalm 34:5-6

Saturday, May 20, 2006

Quote for the day...

"People commonly educate their children as they build their houses, according to some plan they think beautiful, without considering whether it is suited to the purposes for which they are designed."

~Lady Mary Wortley Montagu

Wednesday, May 10, 2006

don't fence me in

It has been brought to my attention that by my speaking in terms of "recovery" and "autism," it is unacceptable for me to also embrace acceptance.

I have been puzzled by this "either/or" conundrum. Why must the two be mutually exclusive?

I don't think that they are. As a thinking person, my views on autism and what it means to me and my family are engaged in an ongoing process. An evolution of sorts, expanding on some fronts and narrowing on others.

Three years ago when autism first came crashing into my lexicon, I though in terms of "cure." Things were very difficult around here. I was scared and embarking on a journey in completely unfamiliar territory to me. My children seemed like foreign creatures. We had no relationship beyond a very rudimentay one of a mother providing the basic needs for her helpless offspring. I was at an utter loss when it came to communicating to them or understanding what they were trying to tell me. It was a terrifying era in our family, for everyone. Having no experience with anything I was dealing with on a daily basis and having had no exposure to anyone who had, I longed to take what I had and make it fit into the landscape that I was familiar with and I used the only tongue I knew when describing what we were trying to achieve.


As I was exposed to a few ideas and approaches, I added those to my vocabulary and roladex of experiences. Those first exposures were to therapists and professionals who were not parents or people living with ASD. So my earliest understandings and expressions about our day to day experiences adopted that vocabulary.

*sensory intergration
*target skills

We began to make progress. There began to be communication between my children and myself. I became less afraid and unsure of my abilities to love and protect and parent these girls. My base of interraction expanded futher. We added more words.


As we continued, I began to actually get to know these wonderful and amazing children of mine. I was almost embarrassed by how much they delighted me. Such unique little minds...I was often in awe. Learning what they really liked to do, and then going out and doing stuff. Sharing experiences as a family. And the evolution continued.


We bandied that word about. Tried it on for size. Trotting it out and feeling brave we made our first inroads into the typical world around us. We have had some successes.

And some rebuffs.

And now we are about to really step out into the world with kindergarten and other parts unknown. My interests and need to seek knowledge and understanding is expanding again.


So, what does this mean? Have I betrayed my former self because I no longer search for a cause or a cure? By accepting the "quirks" of our family and the girls (and myself) do I no longer dare use the word recovery? Does this mean I must now embrace "autism as culture?"

I don't think so. I don't think claiming recovery is mutually exclusive from embracing differences in neurological wiring. Recovery to me is a dynamic word, implying an ongoing, hopefully progressive process that is not yet finished and never will be until we're pushing up daisies. We are all recovering in this house. What we thought we were going to have, how we thought it would be, how it was all going to work out in the end, that's gone. And we are recovering from that. We are all still works in progress. I have not perfected communicating with my girls. We still struggle and spend a part of each day frustrated and at a loss as to what to do next. We are recovering from the imprint that fear made on our hearts and minds. We are recovering from being narrow and stiff-necked about what recovery means to us. Everyday I find myself more pliant and supple within our circumstances. My mental muscles are less taut and that enables me to stretch and reach and discover new strength that I didn't know I had or even needed.

I have no intention of creating a manifesto or mission statement defining in black and white terms my relationship to autism. I don't want to be bound by one perspective. I intend to keep on moving. I will not return to a static and limited vocabulary and repetroire of experience just because it is comfortable and familiar. People have been trying to put me in a tidy little box and define who I am my whole life and I just can't live like that. It is suffocating and I refuse to do that to my girls. They've just gotten their wings. I am not going to clip them now. That would be cruel and that would be hypocritical. That would be regression. And regression is one term I will refuse to consider.

I am absolute about that.

When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me.
1 Corinthians 13:11

Forget the former things; do not dwell on the past.
See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland.
Isaiah 43:18-19

Tuesday, May 09, 2006

What is Tom saying to Maureen?

Ian Hacking, who holds a chair in the philosophy and history of scientific concepts at the Collège de France in Paris, has written an excellent review for the London Review of Books of two new books:
The Science and Fiction of Autism, by Laura Schreibman and
Send in the Idiots: How We Grew to Understand the World, by Kamran Nazeer.
This is much more than a book review. I hope that you will take a moment to read this piece. It is a worthy read in itself.

The end of a matter is better than its beginning, and patience is better than pride.
Ecclesiastes 7:8

Monday, May 08, 2006

garden: a thing of beauty and a joy forever

Encouragement for all of my fellow tenders of orchids:

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.
Galatians 6:9

A FEW YEARS AGO, I ATTENDED A CONFERENCE in which the speaker painted a beautiful picture with her words. She told of planting a wild strawberry plant in her garden one year and of the wonderful strawberries she was able to harvest and enjoy with very little effort. Not knowing much about strawberries, she was surprised to see that her plant not only survived the winter but thrived and began to spread. In the years that followed it grew with very little care and continued to spread until finally it had overtaken her whole garden.

She then told of her orchid plant. This fragile and delicate life needed much more care than the strawberry plant. It required the right amount of light and water; the perfect temperature and humidity levels. The food had to be just so. The stock needed to be propped up as it grew. The orchid plant needed to be constantly checked to be sure that its growing conditions did not need to be adjusted this way or that. Unlike the strawberry plant that flourished on its own, the orchid needed constant attention to encourage growth. In the end, however, her orchid bloomed, rewarding her commitment with a rich, colorful bud unlike any other she had seen—one that she was indeed very proud of.

The strawberry plant is like the typical child—growing, thriving, and blooming on her own. The orchid is the child who, like our son, has autism. Nothing is simple, nothing is taken for granted. Without the right conditions of diet, intensive therapy, constant care and nurturing, these children would not thrive. They would not learn. They would remain locked in a dark, lonely, and confusing world known as autism. They would, indeed, wither and eventually die without having bloomed.

But my husband and I, like so many other parents we have come to know, are becoming experts in raising the orchid God has given us, and we are being rewarded for our efforts. Every new skill is truly precious. He says a few words, he gives a hug, he looks in our eyes, he knows his name. These are indeed small and expected accomplishments for most children. But to a child with autism, these are major milestones. They represent the promise of an orchid bud that is emerging from the dark and is beginning to bloom.

The commitment of time and resources can be overwhelming. The change in lifestyle is radical. But a child who once had no hope that now shows the promise of a fulfilling future is truly priceless. Children with autism do have a hope and a future. They have God-given potential and destinies to fulfill. Though we as their parents may have to work harder to help them each and every step of the way, in the end we will truly have children of which we can be profoundly proud.

Nevertheless, waiting on God’s timing is not always an easy thing to do. Especially in our society inundated with cell phones, microwaves, email, instant this, and instant that. We are conditioned to seeing things happen now. It is so easy to look at the immediate circumstances of our situation and say that we cannot see God at work because the circumstances seem so insurmountable and overwhelming, and often times, nothing seems to be happening. But to those who are in covenant with God through Jesus, and who are living with Him as their Lord, they can be assured that God is very much at work in their circumstances to fulfill His promise of Romans 8:28: “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” God is busily preparing for the orchid of our lives to bloom, and it will do so in His time.

There are certain things as we go through the waiting process that we need to be aware of. Patience itself can produce certain other worthwhile benefits in our lives. Here are some biblical byproducts of waiting on God:

“A man's wisdom gives him patience; it is to his glory to overlook an offense” (Proverbs 19:11). People of wisdom are people of patience. Another Proverb says, “A patient man has great understanding, but a quick-tempered man displays folly” (Proverbs 14:29). The more patience we allow the Holy Spirit to work in us, the more wisdom we will have for living our lives.

2. PATIENCE HELPS US PERSUADE THOSE IN AUTHORITY.“Through patience a ruler can be persuaded” (Proverbs 25:15). It isn’t the fast-talking, high-gloss presentations that will ultimately persuade the ones who are in authority over us. Those who display patience that not only know how to wait for the right timing, but they also leaves a lasting impression of good character and dependability—a very persuasive combination.

“We do not want you to become lazy, but to imitate those who through faith and patience inherit what has been promised” (Hebrews 6:12). Just as it is with any inheritance, there is a time to possess it. If we were to try to possess an inheritance that has been promised to us in a family situation before the right time, we stand the risk of becoming disinherited. God has given us promises for our future, but if we do not wait on His timing, we could lose the fruit of those promises. Another passage in Hebrews puts it like this, “You need to persevere so that when you have done the will of God, you will receive what he has promised” (Heb 10:36).

“Love is patient, love is kind” (1 Corinthians 13:4). This is a lesson that we, as parents of special needs children, know better than anyone. Most of us seem to have a supernatural level of patience with our children. With all that is demanded of us, however, it can be easy to lose sight of the fact that we need great patience in the other important relationships of our lives as well, including our spouse, extended family, and good friends. It’s important to remember that these are the ones with whom God has connected us, and the ones who will be committed to helping us through in the long run.

“being strengthened with all power according to his glorious might so that you may have great endurance and patience” (Colossians 1:11). No marathon runner began by running marathons. It took the patience of training to gain the necessary endurance to run the race. It is no different with us. As we allow God to take us through the training of life, the patience we develop will give us not only the endurance to run the race to the end, but finish it well. “But those who wait on the LORD shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint” (Isaiah 40:31, NKJ)

“But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.” (Galatians 5:22-23). It seems to be a spiritual law that the fruit of the Spirit are interconnected. Therefore, the more we have of one, the more we will have of the rest. What that means is that as we have more love, we will have more faithfulness; as we have more joy, we will have more peace, etc. Therefore, as we allow the Holy Spirit to work patience within us, we will see the water level of love, joy, peace, kindness, goodness, faithfulness, gentleness, and self-control all rise to an equivalent degree within us.

“Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us” (Romans 5:3-5). Patience is truly a virtue, and those who have it tend to have great character as well. But here we see that those with patience also possess hope. Why? Because those who wait patiently on the Lord have seen Him move, and know that He will move again. Their hope is in the Lord because, through patience, they have seen the depths of His grace, mercy, and power to overcome any of life’s obstacles. And, they know that He will do it again!

May God grant you the patience in every circumstance of your life to see the orchid bloom!

I cannot emphasize enough how blessed I have been by our circumstances. The trials of learning to live with autism have shaped me into a much better person. This has come only by the grace of the Lord, not my own doing. All glory to HIM.
Sometimes I feel guilty that my reluctant maturity has come at the expense of my girls. Bless them. They will never know how much I love them and how they have humbled my prideful heart and mind. Through their difficulties, my hard heart was broken and by the Holy Spirit, it has been abundantly refilled, overflowing and so much better than anything I could have come up with on my own. In a way, they saved my life. They are the instruments in HIS hands anyway.

Those who look to him for help will be radiant with joy; no shadow of shame will darken their faces.
I cried out to the LORD in my suffering, and he heard me.
He set me free from all my fears.
Psalm 34:5-6

Wednesday, May 03, 2006

justice anyone?

This says it all:
Moussaoui, as he was led out of the courtroom after the 15-minute hearing, said: "America, you lost. I won." He clapped his hands as he was escorted away.


Emma Jean has put the birds around here on notice...

She made this sign and posted it the other day:

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She also made one warning the wind to cool it, but it blew away before I could photograph it, LOL. I asked her if she actually thought she could quiet the wind and she replied, "Well, yeah. Maybe. Why not?"
Remember, this is the child who told me that she wanted to BE Jesus when she grew up. Maybe she was practicing with the wind thing.

Abby, ever the animal lover, made this sign:

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She said it was so if anyone lost their kitty, they would know that it would be safe here. She posted it in the backyard. Not sure how many folks will see it. LOL

Little loves. Both of them are my little loves.

I have come that they may have life, and that they may have it more abundantly.
John 10:10
  • International Day of Prayer for Autism & Asperger's Syndrome