Saturday, April 26, 2008

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

Saturday, April 19, 2008

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.

Saturday, April 12, 2008

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.

Friday, April 11, 2008

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.

Friday, April 4, 2008

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 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.

Tuesday, April 1, 2008

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.