Look of Love

Caleb had a home visit with his dad over Thanksgiving. In a photo, Caleb sits with his legs crossed and appears relaxed, reading a book in his favorite chair. He looks happy. This makes me smile. Every little thing in life matters—sometimes so much more than the big stuff.

What is your big stuff?

Does it really matter so much?

Try making a glance at a loved one turn into a meaningful gaze. If this is hard—practice.

Our Time

A Poem for Caleb

Tromping through coastal grass and brambles, I overlook flood plain, mineral rights and agricultural exemption. In the spider's dewy web and butterfly's dance, in the cool green/brown air, I search for a trail to walk with you. We will sit on the porch of a wooden house at nighttime. Do you hear the rain on the tin roof? Do you taste the roasted marshmallows of Summer and Fall? It's like you're a child again. Touch the angel's wings at Christmastime. Let the glitter fly. I will see you there. I will hold your hand very long times at a time, after the scheduled meals are gone, the assigned sheets washed crisp, folded, and put away. I will play dominoes with you before the fire. The table is broken now, but we will fix it together. One day we will hammer and sand and paint. Close your eyes. Mama cooks dinner. Smell the bread rising.

Crash

My daughter just sent me a you tube video of a down syndrome girl who became homecoming queen. I usually shy far away from success stories about such. I forced myself to watch and predictably, the tears fell. When will I ever stop believing I've failed, and continue to fail, as Caleb's mother? I do not know the answer to that question. I only know my heart is broken.

Precious Son

My Dear Caleb,
I so enjoyed seeing you on Saturday. Holding your hand, you touching my face, walking in the park. With you it's almost like time stands still. We do the same things we did when you were small only now you dwarf me when we lie next to one another for stories. XXX

The Mustard Seed of Faith

My Dear Caleb,

I can't wait to see you on Sunday. I pray that you are doing well. I pray for your peace, for friends who listen and who love you. I pray for important people in your life, like teachers and helpers who care. I pray for the day that you and I will have a long conversation over a cup of tea. We will laugh and talk about everything under the sun, and then some.

This day is coming, Caleb. I have the mustard seed of faith in my heart and I'm using it to move your mountains. Your tongue will be loosed. Your mind will be full of organized creativity and your thoughts will be fully expressed and understood.

Confusion and anxiety will flee.

Obsession will blast into a million pieces of nothing.

It's not positive thinking or new age feathers in the wind.

It's God's all powerful Word.

For now, I hold your hand. I look into your beautiful blue eyes. I touch your face with tender knowing.

I thank our loving God for His care and for the privilege of hearing you say, "Hi, Mom."

I thank God for your innocence.

I thank God for you.

XXOO

Love,
Mom

Sad

Well, things aren't going so well again. My dear Caleb has a terrible abrasion on his forehead from banging it on the concrete last Saturday. Apparently, he did something close to the same thing the next day, furthering the damage. And now they say he's picking the area like crazy, so healing comes hard.

My thoughts right now take me back to the days we first discovered Caleb's plight and the years following. One day I will go there. As hard as I try right now, it's locked down tight.

Pray for a mother, a father, sisters, a brother—-and for my baby.

Autism affects all.

Is It Possible?

Is it possible to be the most devastated and the most deliriously happy person on the planet at the same time? Many people regularly alternate super highs and dark, dark, lows. These people are called bi-polar. But I'm talking about experiencing these very real emotions simultaneously.

This phenomenon has occurred in my brain before, and happens just about every time I see Caleb actually, so today won't be the first or last time. But today I feel a need to express this while it's fresh and with me still. I think it may be accurate to equate what happens to the way one feels when utterly and completely lovestruck.

What amazing fortune. What a tragic nightmare.

Caleb's smile and a knowing look in his eyes does this to me.

Today we played Monopoly. We have our own version. There are no property deals or trips in and out of jail. What you roll is what you get, in dollars, counted one by one in your hand. With each turn you get a house or a hotel—-whichever you choose. You may place the house or hotel wherever you want on the board.

There are two players only—-the horse and the iron.

Caleb wins.

He smiles.

It's a dream come true.

Plea

Hi Caleb and God,

Caleb, why are you so sleepy? And why did you pinch your dad yesterday?

Please, God --- Here is my prayer --- let Caleb somehow tell us the answers to these questions. And also what it feels like to be him, what he wants and needs and loves and hates.

I know you want to communicate Caleb. I want to understand. Love, Mama

I know you want to help us God. I know you have a good plan for Caleb. Don't allow me to stand in the way. Open my eyes, my ears, my heart. Change me and help me. Amen.

A Hard Place

On Sunday, Caleb was sound asleep when I visited—for the entire visit. I did everything, shy of pouring ice water on his head, to wake him up. At one point, I think he saw me. Dan was there and he swears Caleb's eyes opened just a slit at the same time he smiled. I thought that was him smiling in a dream. After that though, he did rest his arm on my leg and I felt he knew I was with him. Why couldn't he wake up? I checked with the nurse. No med changes. No seizures. The caregivers said he had been outside a lot before we arrived and there was obviously some problem with the ac unit for his building. So maybe the heat wore him out. I can only hope he is not depressed. You know how people tend to sleep more when depressed. His dad sees him this weekend and I go again the next. This is the way it goes for now. We are taking it slow on the visits, so he can adjust to his new home and community. I am torn. But I pray, and rest knowing Caleb is safe in God's arms of love. Yet, am I a terrible parent? I ask God this now. Anguish and autism go hand in hand, at least in my experience. My torment has moved from what could I have done better to what can I do? Oh, God, I am in need of help. Thank you for being everywhere at once and being Caleb's one perfect parent. I release my pain to you. I release Caleb to you. I trust.

Happy Caleb Day!

I got to see my sweetheart, finally, after three weeks. Here he is at Brenham State School. Compare to the photo before the move (April 4th post). He is happy.

"Hello Mom"

Those words are priceless to me from Caleb. Our conversations are brief - only six more words - I say I love you and he says it back. It's the tone I listen for. I see his face. He smiled the other day. When his caregiver came back to the phone I said I knew he had smiled. She confirmed.

"Yes, right now he is laughing and slapping his leg. He seems happy."

Exactly what a temporarily banished mom needs to hear.

Caleb is safe.

Missing My Child - Hanging On

There are some wonderful people in Caleb's new world. Mary and Susan, the full-time, on-campus nurses actually working with me by giving Caleb the supplements I've tried for so long to get caregivers to give, and who Caleb seems to like already; Marilyn, the speech therapist doing her darndest to capture an assessment; then there's Shawn, Kim, Detrick, Debra, the doctors, the physical therapist I missed meeting but who is working to get Caleb on an adult trike; and there are many, many others. Wow. Caleb has a nutritionist, doctors of every specialty, psychologists onsite around the clock. He has a caregiver with him one on one through this adjustment period. Caleb has everything he needs at his fingertips except his parents and family.

His dad and I have been instructed to give Caleb time to understand that this is his home and his community. That never took at the two group homes which were near to us. Maybe our frequent visits and trips to our homes added to his troubles.

It is a bittersweet time and soon we will have a bittersweet reunion. I am gathering strength to hopefully not cry when I see him.

We love you Caleb. You are with us in our hearts right now. I am making you a picture book. We are cheering you on and we will see you soon! xxoo

One Caleb Smile

One thing worried me and that worry was obliterated by one Caleb smile.

When I first visited Brenham State School, to check it out as an option, I liked everything I saw except that opening at the top of the wall partition between two bedrooms. Well, that and a possibility for two roommates when he was used to privacy and quiet.

Last Wednesday, April 16, 2008, Caleb was admitted to BSS for some much-needed help. There is no roommate for now. But the greatest thing, the great Caleb smile-inducer, is this: On Wednesday, he had been fidgeting and behaving nervously in general. He knew what was up and I'm sure there was apprehension about moving to yet another new place. But when Caleb heard his next door housemates talking—through that opening between the wall partition and the ceiling—he perked up. Something in what they said seemed to relax him. He understood the meaning in their language whereas I did not. His smile was a knowing one. Like maybe he would like the place.

A sense of community maybe?

For the next two to three weeks my job is to allow Caleb to adjust. I must rest in God. A tough job for me, but the memory of Caleb's smile will be my strong companion.

Just One More Step

In general, I find autism conferences uncomfortable. Tearing up usually happens to me at those conferences, and I'd rather do that at home. There always seems to be something going on at the time and some word spoken, which serves as a trigger for accidental public emotional response. This explains why I waited until the very last minute to decide about today's Applied Behavioral Analysis Conference.But attend I did.

The tears happened en-route this time, as soon as I backed out of the garage.

That's when the light of day hit my son's blue striped sheets and towels, piled high next to me on the passenger seat. It suddenly became real that I was hemmed in on all sides and behind by everything Caleb owns. I would sit in a room and dwell on how to help him with behavioral issues, while nagged by the painful reality that in three days he will move one and a half hours away—to Brenham State School.

What should I be thinking right now, I thought. Why am I going to a conference today anyway? Like the experts are going to let me visit while they adjust his long list of mind altering drugs? Like I'm going to run up to Brenham everyday and guide him through all I learn—the same stuff I've been "learning" since he was four?

The conference was ten minutes from my house. Ample time for a full-fledged breakdown.

Surprisingly enough, the ABA Conference turned out to be a pleasant experience. Sitting in the meeting room I noticed a few emotional faces. Especially the mom behind me, at lunch, when I shared the story of Caleb's communication breakthrough after one year of no words. Thankfully, hers were tears of hope.

Remembering the story made me feel shored up for coming change. After encouraging someone else with a Caleb experience I wondered if that was the main reason for my attendance at the conference. Could it be, after all those years of hiding out that I may actually have lent a helping hand to another mom in the same boat?

I told about Caleb emphatically demanding that he be removed from a cold lake where we swam when he was six years old. Caleb said, "Get me out of here" and that was the end of his horrifying silence. It was a miracle.

Of course there was a plan set in motion after that day. No more giving Caleb juice when he reached and did not attempt to ask. No more allowing his big brother and sister to fetch his every assumed whim. Caleb had words inside and we all knew it. Bit by tiny bit, his vocabulary returned that year. It was hard to break old habits, but this was best for Caleb, so we did as the school speech therapist suggested.

"That is what we are going to try now," the mother of a non-verbal six-year-old boy said, in response to the story. She smiled through beautiful wet eyes and seemed shored up herself. She said, "Good Luck" and so did I, because that's something kind strangers say.

But honestly I know it’s God we need, and education, and one another. All this together makes hope.May you find hope today. If you are in pain, don't hide; Put your car in gear and face the light of day. Life's most difficult journeys can turn out to be the most rewarding.

This Day's Report Card

Good Things Today:
1. Held your hand.
2. Four smiles.
3. Two hugs.
4. Seeing you lay the cheese on your sandwich and so specifically fold it over.
5. You ate your food calmly.
6. You sat on the couch and looked at magazines.
7. You didn't pick your wounds. Very great.
8. Knowing next Wednesday begins a whole new plan.

Made Mom Blue Today:
1. When you drank the carton of coffee creamer.
2. Pushing/pulling me around.
3. Packing your things for the move.
4. Saying goodbye after our time together.

Caleb in Ben Taub E.R.

This photo was taken two nights ago, by Caleb's father. The two of them stayed in Ben Taub E.R. until close to four a.m. and then left without a C.T. scan (for head trauma) because massive amounts of drugs did not effect Caleb enough to allow the scan.

In This Crazy World

The Bible says we will have tribulation in this crazy world. I would say my family is there right about now. The past few days have been a rollercoaster ride of E.R. visits, Dr. appts, wall slams, head butts, pinches, slugs, sleepless nights, and bites. In between all that there have been wonderful hugs and looks of prescience from Caleb. (the fleeting I'm-so-in-here-please-help-me-get-out look) What is going on? Caleb was taken off of Depacote (an old seizure drug) because of bad liver function numbers and Depacote was replaced with a newer seizure drug and another drug. Sorry, but these names escape me at the moment. That change in his body chemistry is factual. Now for speculative factors, which may or may have added to Caleb's heightened trauma: 1. dietary alterations 2. additional client added to his house 3. staff in group home not sure what to do 4. increased awareness increases frustration 5. he's a drug addict and needs to be clean ( read the Ann Bauer article at theautismspectrum.blogspot.com) So, there are facts and there are theories yet to be proven. In the old days, autism was thought to be caused by the mother's cold attitude toward her child, so even though I am the one for innovative avenues of hope, I also believe in science and proof—or disproof. But life goes on and so far today, no call from the dayhab, hospital, case worker, etc... The place where Caleb lives and goes to the day program is wonderful, in my estimation, but one problem, they are humans. So, like Caleb's parents, they don't have every answer or every ability. We all work with what we have at the time the dark stuff hits the fan, then later we get together as a team and clean the walls the best we can before the next thing happens. Right now I must count my blessings. I am thankful for Caleb's father and his eternal devotion to our son. I am thankful for The United Bible Fellowship Ministries, where Caleb lives. I am thankful for Gary Doddridge, Caleb's case worker with Tri-County MHMR. I am thankful for the prayers and support of my husband, my friends, and my family. I am thankful to God that right now Caleb's paperwork is being evaluated at Brenham State School, where the goal is to take him off of all medications and begin to find the young man now locked inside. Please pray. Thanks for being there. Btw, the blog mentioned above is my son Cliff's blog. Cliff is a brave 25 year old, gifted father, husband, son, creator of websites, linquist, English teacher in Japan, who grapples with autistic symptoms himself. I hope you will read his story. You may note my ex-husband's story as the second post, with beautiful pics of Caleb. By that post it will seem that Caleb has no mother. Otherwise the blog is true.

Letter to Caleb

Hi Sweetheart,
I missed you so much this weekend when I was out of town. I thought of living on a farm with you. Maybe you would like being free to roam the pastures, but then again, maybe you wouldn't like the cows and other animals so much. But you might adjust. One day we may find out. Anyway, I wished you were with me in Fredericksburg the entire time. As I found out tonight, you missed me very much as well. The temper tantrums need to stop, Caleb. I love you and try to keep the schedule. Next time I leave I will call and explain. But please don't bite yourself and hit your head anymore. No need to scream. Your parents both love you and also Tamina and many, many other people. You are not alone. Please don't pick the hurt places on your body. I'll see you tomorrow. I pray your rest is sweet.
Love,
Mama

Thinking on the Sweet

Tonight I'm not thinking on the rough stuff that happened—Caleb trying to manhandle me outside the house to take him for a car ride; Caleb eating porkchops, macaroni, and spinach by the fistfull; or Caleb peeing a small lake, on the floor next to the toilet—no, I am not. I mean I won't now. I will go to sleep thinking on the beautiful thing that happened. I sat at the table in his room, building with Legos. He sat on the end of his bed, looking through books, and also building with Legos. At some point, I noticed that he had placed his foot against mine and kept it that way for about ten minutes. He was calm during this time, and happy. So was I.

Autism is 24/7

Okay, there has to be a first time for all things and this is it. I'll simply state my goal for this blogsite. I want to clear my mind of all the thoughts of my son so that I can sleep at night. I constantly battle worrying over Caleb. He is my youngest child beside my stepdaughter, Laura, who is fifteen, and causes me no angst. Anyway, Caleb is 23 and lives in a group home which is 45 minutes from my house. He does not live in my house because caring for Caleb is 24/7 with no minutes off. This takes a team. I am part of the team. I do not know how to be the entire team myself, or to recruit others to be on an around the clock watch at my house. So there is guilt involved at times. Maybe you sense that so I might as well say it. There are regrets. There is pain. There is insomnia and nervous eating at times. And all of these things are on my part. Imagine how it feels to be an autistic young man. I won't try to, or at least I hope I don't ever try to speak for Caleb and say how he feels. I may say what I think he may be feeling but let's understand that I am not a mind reader for him. He does not channel his thoughts to me and he is low verbal, meaning that he basically asks for what he wants or needs and that only part of the time. So anyway, I plan to pour out my heart after visits with Caleb and to say how I feel about our time together. Maybe this will help someone else feel that they are doing wonders when I'm not doing so well, or just help another parent feel not so alone. Maybe I can help someone else open up and dialogue about autism as well. It makes me feel better to get it out. We all need to share and we all need to just vent. Since a free blog is available for this, my therapy, here I am. I see Caleb tomorrow. I'll be back then.