Journey of Faith and Loss

Several months ago an announcement was made in church that more or less left me in a state of shock. It took a bit for the information to sink in but by the time I drove out of the parking lot I was overcome with great sadness. The announcement – Pastor Mariellen was to be transferred to another church in July. (Please review Journey of Faith, August 12, 2014 to refresh your memory about my experience with Pastor Mariellen.)

I never thought the news of a pastor being transferred would affect me the way it has. I guess I was totally in shock because LAUMC has a history of senior pastors staying long term, at least since I have been a member here. The news caused me to sink into a state of depression and a great sense of loss.

I was in a zombie state for several days. Tears came easily and sleepless nights were many. To add to my confused feelings was the possibility of my best friend moving out of the area and changes in the care of one of my sons. So many challenges hitting all at once, but I had to continue taking care of the family.

Feelings of anger began to take over. I have no idea why Pastor Mariellen was to leave nor did I have any control over this decision. It really doesn’t matter because the decision had already been made. I had feelings of being neglected, empty and even worthless. Why couldn’t people understand how important it was to me to have a pastor I could understand and communicate with so easily? I know I am only one or two members in this large congregation who depend on interpreters and ASL and should not take it personally, but it still felt like I was being singled out. I’m sure most people have no idea that for more than 64 years I have had to depend totally on speechreading to comprehend conversations with my pastors. With Pastor Mariellen, I didn’t need to use my hearing aids to make sure I was using my voice for her to understand me. We could sit and sign. It was so comforting.

I felt like I had even let Pastor Mariellen down by not being able to recruit more deaf people to come to LAUMC. Sadly, those I invited were not interested or were of different faiths. There is not a high population of signing deaf in this area and I knew she was eager to connect with more signing deaf and wanted them to be a part of her ministry. It just never happened.

I also felt angry with myself for not taking better advantage of her skills while she was at LAUMC. It’s not like we met up every week to chat or discuss personal issues. In fact, it was more like once every three to four months that we made time to sit down for half an hour or so. What I have truly lost is the comfort of knowing my pastor, who was fluent in ASL, was just a few minutes drive from home.

As I grieved I decided to make a special gift for her, something that would remind Photo of Quilther of those of us who claimed a small part of the front corner in the sanctuary. I allowed myself to shed some tears as I put together her gift. Most of the t-shirts I used in the blanket were designed by my friend Beth and I for the United Methodist Congress of the Deaf where I first met Pastor Mariellen close to 30 years ago. Here is a photo of the project that helped me some with the healing process of loss.

I would like to thank Pastor Mariellen for accepting the position at LAUMC as senior pastor, even if the appointment was not long enough for me. Thank you for sitting on the cold, concrete floor to interpret a service when there was no interpreter scheduled. Thank you for inviting me to sign a favorite Christmas hymn at the Christmas Day service. Thank you for supporting my family through some extremely emotional times. Thank you for digging up some of my purple iris bulbs and taking them along with you to your new home. May they grow and bloom with your care.

We now have a new senior pastor at LAUMC. I have only shook her hand once but she sent me an email inviting me to meet with her tomorrow. So once again, I will turn on my hearing aids, learn her flow of speech, try to find a good position and lighting, and all that goes along with speechreading. I pray I can understand without too much trouble and be open-minded enough to establish a positive relationship with her.



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Planning Ahead

As a parent of adult sons who live with special challenges, I am learning how difficult and time consuming it can be to plan ahead for their future. To be honest, I have been aware of this for a couple of years but it truly hit home this past week. Where has my mind been?

Graphic of Handbook for ConservatorsI had been working with a lawyer friend sporadically for about three years with the idea of transferring my responsibility of conservatorship to an agency for six of my sons. Sadly, my lawyer friend had to take early retirement due to health issues and we never completed the goal. The options aren’t that great, according to the instructions given to me, for conservators wanting to end their responsibilities. To name a couple, either the conservatee or conservator needs to die or the conservator needs to get into trouble and be removed by the court. Well, none of these three options has happened to date. Therefore, I have reached out to a new lawyer for assistance but…..

After meeting with the new lawyer for a little over an hour and trying to explain my family’s situation, more and more information was fed into my brain to the point it’s a bit overwhelming to comprehend and accept. First, I need to set up an estate plan (I know this is something most people need to do) but there are so many things to consider in my situation. How long will I be able to live in my home and continue to make the mortgage payments? Who will receive what from the estate? Where will I live after I sell the property? How will the sale of the property affect my taxes? It’s mind-boggling and I am sure you don’t wish to know. And do you have any idea what the legal fee could end up to be? This bill is for 1 ½ hr meeting and a written summary of our meeting only!Graphic of Estimate of Attorney Fees

So, back to the end of conservatorship topic. I need to develop the estate plan and, before the agency I was considering would step in, I need to set up Special Needs Trusts for those sons who are conserved. And it seems like they would require me to document 50% of the estate for six sons. What about all my other sons who don’t need to be conserved? I don’t feel it is fair to commit 50% for six of them at this time. So, I continue to be conservator until I figure out another plan.

Now, the Special Needs Trust is another whole overwhelming undertaking. Are you aware there are different types of Special Needs Trusts? I was not and I do not plan to go into detail about that because I really don’t understand it yet. However, the restrictions for how much money, cash, or gifts for those receiving public benefits and what the trust can actually be used for seem absurd to me. Several months ago I spoke to someone who is young, smart, highly educated, capable, and knows several of my sons, to inquire if he would consider becoming the trustee for the Special Needs Trusts. He said he would be interested. However, I did not understand at that time what the trustee would need to do. After reading up on this, I feel guilty for even considering a friend, or even a family member, to fulfill this responsibility. The responsibilities of an appointed trustee are tremendous.

To make things more confusing in my situation – determining which of my sons should actually have a Special Needs Trust and who should be placed in a regular trust fund. Do I develop a Special Needs Trust for those who have previously had public assistance but who are not at this time receiving SSI or SSA income because they are working fulltime jobs? Due to their physical challenges, however, they may need to go back onto public assistance in the future. Or should I simply put those few under a regular trust fund? Do I have to compile a trust fund for individual sons or can I pool them all together into one fund? I’m sure I have you all confused by now but let it be known, you are not alone as I am totally confused as well.

I know all these legal things need to be taken care of and I am aware that I can’t do it alone. I had a meeting this week with a couple of people from church who plan to help me out. I am so thankful for this support. I will not give up but will continue to move forward to help plan for the future for my sons. At least one major task has been completed, Advance Health Care Directive Kit for most, all who are conserved and some who are not. So, I give myself a pat on the back for accomplishing that much.

Surely I am not alone in this challenge. Please share your stories of Graphic of Advanced Health Care Directiveconservatorship or Special Needs Trust issues in the comments below.



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Hiring Help

Trying to find people to help with my sons has been an ongoing challenge. When my sons were babies I thought it would be fairly easy to find someone to care for them while I was teaching classes or running errands. Most babysitters could lift my tiny guys and changing diapers is a norm for an infant or two-year-old. However, that belief proved false when parents of teenage babysitters learned that my son Derek might stop breathing (you can read more about this story in my book).

When my sons became preschool age, finding helpers became somewhat easier, if I recall correctly. However, I wasn’t leaving my sons in the care of others; I needed someone to help push a wheelchair or feed them while I was close by feeding another son. These helpers weren’t actually responsible for the guys’ physical/personal care.

When my sons became teenagers I recall having two people who could be trusted to care for my sons. One man was able to lift, bathe, and feed one group while one lady helped with the more medically fragile sons. Today, these two people are not available.

Currently I am searching for care providers who are approved by the county agencies and this has become a circus, so to speak. Our home is in a rather rural area that is not densely populated by such caregivers. Not only are there few available but most are older who may have many years of experience with providing care to the elderly or stroke victims. Of course my sons are adults but not elderly or stroke victims and their care is different.

The first requirement for being a care provider in our home is to single-handedly be able to lift a minimum of 90 pounds. After that, being able to help my sons who have cerebral palsy with their personal care: toileting, dressing, and feeding. Minimal help with laundry and light housecleaning of their rooms is appreciated.

I will share a few stories of what we have experienced within the past couple of years.

The referral agency sends me a list of potential providers. I ask Kyle to help make the initial phone contact since he has clear speech and excellent phone skills. He leaves a message and waits for a call back as most people don’t answer their phones on the initial call. I’d say close to 95% either do not return calls or speak little of the common language in our home.

And here are a few stories about those who did return calls.

Steve arrives on time to meet with me and be introduced to my sons. He is well dressed and several years younger than me.

“Steve, how many pounds are you able to lift?” I ask.

“I’d say about 50 pounds,” he replies. After a few more questions about days and hours he might be available we realize they don’t line up with the days and times we need help. I politely usher him to the door.

Roberta arrives for an interview. She is rattled because she has to drive on the freeway to arrive at our home. This just won’t work for her. She has decided before I can even ask any questions.

One man returned a call but he is only available at night while everyone is sleeping. “No thank you, sir.”

Last week I interviewed two people. First was Susan. Susan showed up without confirming a day and time she planned to come by. Fortunately I was home and so were my sons. I went to the door to meet her. I invited her inside and she walked very wobbly up the ramp and back to one son’s room. I introduced her to Alan, she was leaning on his dresser, weaving back and forth and dropped her keys. She was sleeping while she was standing up. I tried to figure out what was going on with her and tried to keep a conversation going.

“Do you think you can actually lift Alan? He weighs about 90 pounds,” I asked.

She briefly opened her eyes and answered, “I’m sure I can. I’m pretty strong.”Photo of Alan Looking at NO on tray

Throughout this Alan was sitting beside me with an expression of fear and constantly looking at NO on his wheelchair tray. I reassured him this lady was not going to be working here as I ushered her out of his room.

Before she actually got out the front door, she dropped her keys a couple more times, lost one of her shoes that she couldn’t get back on. And she stopped midway down the ramp, leaned against the wall and slept standing in her tracks.

I had no idea what to think of this. Others in the house were starting to panic as well. She finally left the house and went to her car. As I shut the door and walked back inside, I emailed the agency to inform them of what had just happened. I was assured Susan would be removed from the list immediately until a supervisor could look into it. I did not want any other clients to have to deal with this.

About five minutes later I realized her car was still parked behind my van and she was asleep in the drivers seat. I once again contacted the agency and that person offered to call her and ask her to move. She called twice but Susan never answered her phone. Sergei came home from work and barged through the door, “Is that woman in that car out there dead?” he shouted. Kyle had plans to use the van but she was parked behind it. He finally got her to wake up and asked her to move but she immediately fell back to sleep. Then the idea of pressing the PANIC alarm crossed his mind. I was not there to witness this but he said she jumped out of her seat and started her car. However, she only moved it a little and there still wasn’t room to get our van out of the driveway.

Finally, I went out and rapped on her window and got her attention. “Susan, do you have a medical emergency?” I asked.

“Who me? No, I don’t have a medical emergency. Why do you ask?” she replied.

“We are concerned because you cannot stay awake,” I said.

“Oh, I worked all night and I am just tired. Do I need to move my car?”

By this time I was honestly concerned about other people on the road as she pulled out of the driveway. Even if she had worked all night, it was now 4:30 in the afternoon and she would have had several hours to sleep after her nighttime shift. Once again, I emailed the agency and informed them that she had left the property. For some time after she left, this was the talk of the house. I have never seen my sons so shocked as they were that day.

Cheryl arrived two days later to meet my sons and discuss how she might be able to help. After the interview with Susan, Cheryl looked like a queen. She was more tuned in to the conversation and appeared to be knowledgeable about more things but, like many others, couldn’t lift more than 50 pounds. We both agreed to think about it and I would contact her once I talked with Ben and Alan. We finally decided to give her a try even if I still had to do all the lifting.

Her first day on-the-job training was to help feed Alan and Ben. Oh boy, she had never fed anyone like Alan! Sure enough I had been under the impression she had experience with this. She also said she knew how to tube feed but when it came time to feeding Ben, she had never seen the newer MIC-KEY* buttons. I had to sigh, take a deep breath and hold my tongue. She also had never used NO RINSE shampoo, which is what I have been using with Alan. I questioned myself if it was the right decision to have her come and help.

Her second time here, I also spent most of the time showing her what to do. I still had to prepare Alan’s food and medications but I left her alone with Alan to actually feed him. I explained that she could wash his hair again (alone) while I fixed dinner. I suggested she give him a sponge bath before she left. Or course I had to lift him out of his wheelchair, show her how to get his shirt off, gather up supplies for her to do the job, etc. Then I needed to show her how to put a shirt on and the story continues. The up side of the story is she was trying.

Parents – do you have any “Susan” stories to share? It wasn’t funny at the time but it sort of is now. One thing positive gained from that interview – my sons have more respect for  the decision I made on their behalf.



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My Experience with Hearing Aids

Today I did something I have been putting off for the past three and a half weeks – I went to Pacific Hearing Service to buy new batteries for my hearing aids and have the dry tubes in the earmolds replaced. I stretched my last two batteries for over a month by not wearing my hearing aids any more than necessary. While I was waiting, it crossed my mind that I should finish the post that I started months ago. So here we go…

My hearing loss was detected when I was a child. At that time, the possibility of using hearing aids was not an option. Since I had normal hearing in the two lower frequencies and then a steep drop to a severe/profound loss in the other frequencies, lack of technology in those days was not in my favor. I remember my father telling me that one audiologist said I would be able to possibly benefit from a hearing aid when I was in my early teens if I lost some of the lower frequencies, but I’d have to pull it in a wagon to accommodate the batteries that would be needed to power such a device. Thank you but no thank you!

As I’ve mentioned previously, my hearing loss was a bilateral sensorineuGraphic - Hearing Aid and Caseral loss that was progressive. By the time I was a junior in college the audiologist and I decided it was worth a try to use a hearing aid. My first hearing aid was a body aid with a wire going from the box or case that contains the electronic amplifier, batteries, and controls to the receiver and earmold. I used only one earmold in the left ear and wore the box part under my shirt, which can be annoying if a person can actually hear the rub of clothing against the amplifier.

I didn’t do so great with this hearing aid. However, it did make people more aware that I had a hearing problem when they saw the wire and earmold (this was long before earbuds and iPhones that are commonly used today) but I couldn’t use it for music or in loud environments. When I consider iPhones, Bluetooth, and all other types of devices that use earbuds or some type of earpiece, I have a difficult time understanding why people want to go around with something in their ears. I honestly don’t care to have anything in my ears unless necessary. I wonder if I’d be different today if I could hear the music, talking books, and whatever else people listen to.

Graphic - Behind-the-ear aidsAnyway, after several years of trying to use the body aid and as technology continued to improve, I was fit with two behind-the-ear aids. In fact, I’ve gone through several sets of behind-the-ear aids. Why several sets you may ask?

As my hearing changed I required more powerful amplification. Therefore I purchased more powerful hearing aids. Or, one time I could find only one hearing aid. I ended up buying a new one to replace the lost one. After nine months I took a jacket out of the closet when the weather was cold and you guessed it – there was the one lost hearing aid in my jacket pocket! Dare I mention that one of my Boston terrier puppies decided to chew one. Negative note: one hearing aid was ruined. Positive note: I retrieved the hearing aid before my puppy swallowed it.

Another time I struggled to get one son asleep for an MRI. At last he fell asleep. I placed him on the table for the test and stayed close by. Suddenly – Whoosh! – the right hearing aid went out. Then another whoosh as the left aid went out and all was silent! Not only did I ruin two behind-the-ear hearing aids but they were the best fit I had ever had. If I ever had to say I loved hearing aids, it would have been that pair.

All my hearing aids, until the ones I use today, were of analog technology. Today almost everything is digital and of course they are supposed to be superior to what once was. I disagree with this. I find the digital aids to be more of a sharp sound and I prefer a mellow quality, similar to the sounds I once heard. I have a hard time tolerating my hearing aids even though they have been fit to my audiogram and adjusted to how they should be.

Hearing what is important is truly lacking for me. For example, I was engaged in a conversation with someone at the kitchen table last week. I had my hearing aids on for the purpose of hearing the vowel sounds to compliment the consonants that I understand through speechreading. Suddenly I heard something that totally covered up the speech of my friend and it was so frustrating. My friend finally told me it was the sound of running water coming through the wall of a bathroom fifteen feet from where we were sitting. Now, will someone tell me why it is so important to hear the water when I want to hear speech!

For a long time I thought when I used my hearing aids I would hear the same as others. That fact is far from the truth, just ask my sons. I’ll admit that I’ve become a selective user of hearing aids. I know this is the last thing audiologists want to know but that’s who I am and how I function best.

What about you? Do you use hearing aids? If so, I’m sure you have stories to tell. Go ahead and share one or two in the comments here.







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Emotional Moments Filled with Pride

I normally don’t stop everything I had planned at the moment to write – but as I recall a conversation I had yesterday with one of my sons, I’m filled with emotion and gratitude. I am going to rename this son Frank for confidentiality purposes.

Frank arrived in my home at a young age. He had, and still has, striking facial features. He appeared to be an angry child with a noticeably severe physical disability. Later I would learn Frank had some mild to moderate learning problems.

Frank’s and my relationship seemed strange to me – not like that which I had with my other sons. We could work together peaceably for long periods of time doing physical type of work. I cherished these times together because for some reason I felt Frank was not able to accept the love I had for him. It was close to impossible to give Frank any type of verbal praise. I don’t know why but I feel he was unable to respect himself or to see any worth in himself.

Frank didn’t have many close friends in school. He wasn’t much of a people person and had some seriously delayed social skills. He also struggled with academics because of learning challenges, not that he’s not intelligent. Frank continued to be angry and would express his anger in many inappropriate ways. We definitely clashed at times, however our ability to work together never stopped.

Underneath all this anger I could also see a caring young boy. Frank chose very carefully whom he cared about. I witnessed from a distance many caring and loving moments he shared with some of his weaker siblings. I learned to keep quiet and not make a “big deal” out of such actions because my comments seemed to produce an undesired result. At that point, I decided it would be best to try harder to be a positive role model through my actions and less through my words.

Needless to say, I had my moments that weren’t so positive. I had to apply tough love. To some, my flaws are not visible but to my sons I’m sure they could tell you more than what you would like to know. However, I journeyed through Frank’s childhood and into adulthood with the goal of demonstrating love, care, respect, and forgiveness for others as best I could with the hope he would learn from my example.

As mentioned, Frank was not a “people” person and you can only imagine how shocked I was when I learned his first job was extremely people oriented. I was worried things would not turn out so great. However, he would come home from his job telling me stories about the people he worked with and how much they loved him. It’s obvious he worked hard and loved those people but this job did not last long because of the people he worked for. I felt sad when he told me he was moving to another job because he just couldn’t deal with the people he worked for.

Frank’s new job is not people oriented but he likes the work and works long hours. He takes pride in working hard and performing the best he is able to. So, why am I writing about emotional moments from a conversation we had yesterday? Because the conversation Frank initiated with me was about his feelings. He is now more able and willing to open up with me and share. He shared with me how much he misses the interaction with the people from his first job. He misses how he doesn’t seem to feel appreciated at the same level for the work he is currently doing.

Why am I emotional? My angry, somewhat anti-social son of years ago has worked diligently to improve his life and the lives of those around him. Maybe all the years of trying to provide a positive image have paid off? I would hope so, but even though that may not be the foundation to the reason Frank is who he is today – I could care less. I’m just stinking proud of how much he has achieved with his life and he knows he is loved and appreciated by me.

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Raising my son Kolya, living with autism – continued

In my previous blog about Kolya I focused on his running and climbing adventures (and there are many more running and climbing adventures to share if you’d like me to). There were many other behaviors we dealt with that I’d almost forgotten had ever happened.

Behavior modification, structured environment in the home, and therapy, were recommendations made by doctors and school personnel. It was close to impossible for me to provide most any of these because of the ongoing care my other sons required. I couldn’t even picture therapy sessions with a child who had no expressive language at that time. Therefore, participating in these methods to improve Kolya’s unfavorable behaviors was not something I felt I could handle. However, I was agreed to try medications that might help him conform with rules of society and to calm his obsessive behaviors. I’ll now admit, this was easier said than done.

One behavior that was consistent—whether at home, at school, or in the community—was throwing objects with his feet. He had perfect aim. There were always toys on the roof of the house, in trees, and on the valences in the living room. I received much criticism for taking him in public without shoes. If these people only knew how much money had been spent on shoes to accommodate his left clubfoot and where his shoes were, I think they would have agreed with allowing him to go out without them. To help solve your curiosity of where his shoes might be—they are in the Grand Canyon, the tiger exhibit at the San Francisco Zoo, on the church roof, in creeks, and neighbors’ yards, to mention a few places. He’s flung his shoes at performers on stage, through cafeteria windows at cooks, at bus drivers, and at the pastor during church services. It’s rather funny now to recall these stories of several years ago but back then it wasn’t any laughing matter.

Photo of Kolya Sitting in church, wearing shoes

Kolya loves going to church

Photo of Kolya wearing shoes

Kolya keeps his shoes on and doesn’t throw them at the pastor or the bud vase on the pulpit








Just to let you know, he wears shoes when in public today and it’s been several years since one has been tossed at a specific person or location where it couldn’t be recovered.

Another “talent” I had hoped to curb with medications was his ability to regurgitate. He was so skilled with this behavior and I have no idea how he could do what he did. I mean, he could probably claim bragging rights to this gross activity. I have no idea why this brought pleasure to him but for whatever reason he had the ability to regurgitate solid foods and make them stick to the ceiling. Liquids he would watch run down the walls. One thing I learned was never to make an effort to clean up this mess in his presence because that just brought more pleasure to him.

Finally one of the doctors agreed to try to decrease some of these behaviors with medication. I was close to clueless about the use of medications for behaviors such as Kolya exhibited and not everything was pleasant during the next year or two. With the hope of curbing the behaviors mentioned, new behaviors began. One was peeing down the floor vent in his bedroom. It took us some time to figure out what the odor that was coming from the floor vent was when the furnace was turned on. Finally Sergei found the cause. So much urine had collected in the elbow that Sergei had to crawl under the house and remove the ducts to drain the urine.

Another behavior that began when we started a specific medication was pecking on the walls and on people’s heads. Kolya’s teeth are all different shapes and he has one front tooth that looks like two fused together. This made a perfect tool for pecking. Peck marks are still visible in some places in the house today.

Photo of peck marks on a redwood wall in the house

Peck marks on a redwood wall in the house

In addition to peck marks, the walls became a target for Kolya to bash his head when frustrated to the point of leaving holes all the way through the thick sheetrock. He also had bruises on his back from throwing his body into the walls and door jams.

Oh yes, biting became another new behavior as we tried one medication after another. This behavior had only been exhibited at school and not in the home. One day a CPS (Child Protective Services) social worker came to our home. I had no idea why she was there. I soon learned the school had filed a report that Kolya was biting in the classroom. The social worker wanted to talk with me and not in the presence of Kolya. She suggested we go to a room that would be private and leave him elsewhere in the house.

“Are you serious? Leave Kolya unsupervised in the house? Aren’t you aware of him frequently running away?” I gasped.

She finally relented to allow him to come to a room that was quiet and private so the other boys couldn’t hear the conversation. I explained which medications we had tried and how the doctor would start one for a short period of time and then stop and start another one. I was doing my best to monitor his behaviors at home but was frustrated at times too. She repeatedly asked me if Kolya had ever bitten anyone at home. I continued to say, “No,” over and over again.

At this point, Kolya was sitting straddled behind me listening to the conversation. Suddenly, I felt pain in my right shoulder. “Kolya,” I yelled. “Stop—don’t bite me.” He continued to keep a strong grip on my shoulder. I couldn’t slap him to force him to release his grip. I couldn’t pinch him either. After all, there was a CPS social worker sitting across from me. I tried to release his grip by squeezing his jaw. To this day, I have no idea what I finally did to accomplish being released from his bite and I pray that it will never happen again.

Needless to say, the social worker was concerned about my wellbeing and also Kolya’s. She strongly suggested that I have the wound checked by my doctor. Before she left, I was told that if the situation with my son did not improve, she would need to remove him from the home. I cried. I fretted. I lost sleep. I struggled, wondering if I could handle the situation.

For those who have never experienced having such a child in your home, it’s probably close to impossible to understand what parents go through on a daily, hourly, or even minute-by-minute basis trying to supervise children like Kolya. How to keep him from running away at 2 AM while all the family is sleeping? How does a parent even use the bathroom or take a shower? It was suggested we put alarms on the doors of the house to signal if a door was opened. Maybe that would work for a more “normal” home but for our house, with nine doors and a front door with an opener for the guys in wheelchairs, it would be quite an expense. On top of that was my deafness—I would not be able to hear an alarm. I used flashing lights for the phone but many times I missed the signals if my back was turned toward the lights or there was too much light from the skylights. We did try an ankle alarm with a flashing light signal. There were more false alarms than real ones. Kolya would be in the living room playing and the alarm would go off because maybe he was a foot out of range of the monitor. I had to move the lights and monitors at night when he was in bed. I lost so much sleep it was ridiculous.

Then we tried a sensor mat on his bed. This also was hooked up to a receiver light in my bedroom. Once again, I was constantly getting up to check on him and he’d be sound asleep on his bed. Why the alarm would go off is beyond me. I finally secured a dog’s leash to the belt loop of his pants and held the leash all night as I slept on the floor next to his bed. I can’t even remember how many months I spent on the floor but I got more sleep there than in my own bed running back and forth to check on him.

I asked the social worker about putting a plastic bubble over his bed as a barrier so he couldn’t climb out. “No, Marian, that’s not safe. What if he should have a respiratory problem during the night?” I was asked. I pleaded and explained my thinking about a child who had never had respiratory problems and what are the chances of that happening versus him running away night after night. The social worker would not give in no matter how often I suggested this idea.

One suggestion was to put gates at the ends of the driveways. I was beginning to think some people had no common sense. I don’t know what they were thinking because we are talking about a child who can climb the neighbor’s redwood tree. How much more difficult would it be to scale a gate? What was the point?

After experimenting with several medications, we narrowed it down to one that seemed to work best for him, Risperdal. He also began to attend a school specifically designed for children with autism, The Morgan Autism Center. With the medication and specially trained staff, Kolya’s undesirable behaviors happened less and less. His ability to focus and learn improved, as did his expressive communication. During his teen years we added one more medication, trileptal. He continues to use these two medications today.

CPS never removed Kolya from our home. He is now a young man who is happy, funny, and talented in many ways. He has a variety of interests and loves to be on the go, now capable of socially-acceptable behavior. Kolya now uses his feet for more appropriate activities, such as playing PlayStation and exploring on his iPad.

Photo of Kolya playing PlayStation

Kolya playing PlayStation

Photo of Koyla looking for videos on YouTube

Koyla looking for videos on YouTube







No more pecking on the walls. No more biting. Hopefully no more running. Above all, I’m so thankful for his ability to act mature and enjoy so many things in life.

Photo of Kolya with restaurant menu

Silly guys who thinks he needs dessert

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My Experience with Raising Kolya, My Son Who lives with Autism

For the past couple of weeks, families who have children with autism have been on pins and needles waiting for the outcome of a lawsuit filed by neighbors against a local family who have a son who is autistic.

As I read the articles and watched stories on the news about this lawsuit, many memories of years ago came to mind. In fact, things have changed so much I had almost forgotten many incidents. What I plan to share is my experience only. These are strictly my thoughts and opinions. Please do not generalize that all families who have a family member with autism go through what I went through with Kolya. If my readers have experiences to share, please make comments and share your stories for others to read.

This is the first picture I saw of KolyaKolya came from Siberia where he had lived in an orphanage from birth until he arrived in our home at the age of 18 months. We were told he was deaf and that was the primary reason he joined the family. He also is an upper congenital amputee and our family had previously adopted children who were amputees. I did not travel to Russia to bring him home and had never seen him until he came through the front door. Within ten minutes I knew he was not deaf. He responded only to mechanical sounds, like Derek’s suctioning machine, for example. Kolya could barely sit, had never eaten solid foods, and made no eye contact. In many ways I had no experience raising a child like Kolya and I learned quickly there were some gigantic mountains, not little hurdles, we had to climb.

Kolya was not diagnosed as being autistic until he was five years old. He loved to be held and near people but continued to have little eye contact. He was aware of his environment and appeared to have a sixth or even seventh sense. He could follow verbal commands as he learned the English language. He had no spoken words or functional way to communicate. In fact, I was in denial that he was autistic because of some of the behaviors he displayed didn’t fit into the picture I had in my mind of a child with autism.

Running and climbing became ongoing problems for everyone involved with Kolya’s care and education. I remember the first time Kolya “ran away” and it was before he could even walk! I was in the living room feeding one of my other sons when I noticed cars stopped on the street in front of the house. I tried to see what was happening. Then I saw a lady walking up the driveway carrying Kolya. He had managed to open a sliding screen door and scoot on his behind down the long, concrete driveway, equivalent to five car lengths. He had ripped through his onesie and diaper. From that day on, others in his environment needed to be extra vigilant of the whereabouts of Kolya.

Kolya would escape as soon as someone would turn his or her back on him. Once he Kolya loved to climb and this activity got him into a LOT of trouble, especially on roofs and up the neighbor’s redwood treeslearned to walk, he could run for miles and always in his bare feet because he wouldn’t wear shoes. He reminded me of a deer being free to jump fences or run across highways without being hit. I honestly don’t know how he survived some of his adventures. He had no fears, other than water running in the sink or bathtub.

I could give you many, many stories of his escapes but I’ll reflect on a few (let me know if you want to hear more). He was in a special classroom with one-to-one staff and one day he was in the play area and his staff person turned around to talk with someone. Sure enough, Kolya took advantage of the opportunity to climb a fence and explore the neighborhood. He found a screen door open that allowed him to enter the kitchen of a house. Can you imagine the shock the lady must have felt when she entered her kitchen and saw this little five-year-old standing there in shorts, T-shirt, no shoes and no arms? She asked him his name and of course he couldn’t answer verbally. She asked him several times and finally Kolya noticed a paper and pencil on the counter. He knocked the paper and pencil from the counter to the floor with his chin. Then Kolya showed interest in art at an early agehe plopped himself down on the floor, held the paper in place with his left foot and the pencil with his right foot, and wrote his name. By this time the school had called 911 and the woman also called 911 and the connection was made the calls were about the same child. He was returned to his school safe and sound.

Another school experience was when his speech teacher needed to take a phone call and left him in the room unsupervised. When she came back he was gone. As she stood in the doorway of the classroom trying to locate him, she heard something coming from the ceiling. She looked up and noticed a couple of ceiling tiles were moved. Kolya had climbed some bookshelves and climbed into the ceiling space with all the insulation and wiring for lighting. How? This child has no arms. I’ll ask you only to imagine and please, please don’t ask him for a demonstration.

At home we were constantly challenged with knowing his whereabouts. He could take off like lightning when he sensed someone was not being attentive. He managed to climb a neighbor’s 40 ft redwood tree (remember he has no arms, not even stumps). He’d run into the hills and jump on house roofs. One day he found his way into a neighbor’s back yard and played in the mud while the sheriff’s department spent more than two hours trying to locate him. Finally the owner of the house looked out her kitchen window, realized the movement she saw was Kolya, and brought him back home. Even at his school for autistic children with one-on-one staff he managed to take off on a specially-made bike and ride into the community, crossing city streets, but was found uninjured.

What’s the point of my writing this? Part of the lawsuit states the parents and caregivers of said child were not able to provide adequate supervision. This may or may not be true. One article mentioned contacting the school and comparing behaviors there with behaviors in the home. I think that’s a good idea because it would give solid foundation for the child’s behaviors. I don’t know any of these people. I am in no way picking sides but I do know it’s one of the most challenging duties to provide a 100% safe environment for a child like Kolya, who lives with autism. I would say our ability to know exactly where Kolya was at all times in this very large house was close to impossible. Even at the schools with a 1:1 child-staff ratio he managed to take off.

Finding caregivers who can provide ample supervision and connect for an autistic child while the parents take a bit of respite can be unobtainable. I searched high and low for someone to give us some respite. It never happened while Kolya was young. Therefore it was full responsibility on the part of the family to provide constant supervision. Honestly, it can wear a person out. As mentioned, I am not siding with either family in this lawsuit but wondering if the babysitters/caregivers were skilled enough to provide the proper supervision for the child with autism?

I am quickly going to mention the one biggest, always-on-my-mind fear: Child Protective Services. No matter how diligently I worked to care for my son, there was always the question – “When will they come take my son away?” A child that I dearly loved, regardless of the behaviors he displayed, and what appeared to be insurmountable goals to achieve.

Raising Kolya – to be continued. Please share your stories in the comments and check back for more real-life examples of living with autism.





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On Scattering Ashes, Sharing Memories, and Sacred Places

Pastor Mariellen Yoshino, senior pastor at LAUMC, and I recently shared an inspirational and private time at a peaceful location, which I will keep secret. Pastor Mariellen had never been there and was enthralled with the beauty. The idea of sharing memories of my sons who have passed away and scattering remains for some of them had been on my mind for a while. I asked Pastor Mariellen if she would come with me.

This location reminds me of the creek behind my childhood home, only it is much more beautiful and doesn’t smell of crude oil from the oil fields as described in a long ago post, Sanctuary Among the Hills. First we hiked along the stream I knew of and where I had visited a couple of times. We wanted to find the perfect spot. After hiking one direction, we retraced our path and headed in the opposite direction – there it was, the PERFECT PLACE. Pastor Mariellen chose to sit on the damp ground and be close to the water. I chose a web of tree roots for my seat.







Pastor Mariellen blessed our location and immediately I felt a calm within. She had never met any of these sons but she now knows bits and pieces of my journey with each one. I had brought along a few photos, the programs from the memorial services that had taken place years ago, and the remains I had never scattered. I didn’t have remains for all of them but as I told her about my sons, she prayed for each one individually and sort of “sent them on their way”.

I suggested we “perform” the song “In This Very Room.” (*See lyrics below) I decided I should not sing (God forbid how that would disturb the peaceful setting), but sign only. Pastor Mariellen sang and signed and we changed the word room to place. In between sharing some poems about the boys my mother had composed and a piece a close friend had written, I would scatter the remains of one son at a time. I found a special location in the stream for my sons – one flowed more freely than others while some didn’t seem to want to move on but to hang around for a bit.

I’m not sure why I didn’t make the decision to scatter my sons’ ashes before. However, for whatever reason, my heart told me the moment to do this was now. It’s been difficult for me to let go of my sons. Too many have passed away before me. The end of life for each one was a completely different experience but one thing that was the same – I never had much opportunity to grieve.

I felt free to share some of my deepest feelings with Pastor Mariellen about my struggles with the why of how some of my sons entered my life. How challenging it was for me to physically and emotionally care for some and others it was easier for me to handle their physical care and deal with my emotions differently. She listened, understood, accepted, and had an explanation that instilled an inner peace. I know there will continue to be times when I feel lonely, sad, and empty but I know I have this sacred place to return to when I am feeling a need to find a quiet place. A place to spend an hour or two where I know I can feel the spirits of my sons who have gone on before me.

*In This Very Room

In this very room there’s quite enough love for one like me,
And in this very room there’s quite enough joy for one like me,
And there’s quite enough hope and quite enough power to chase away any gloom,
For Jesus, Lord Jesus … is in this very room.
And in this very room there’s quite enough love for all of us,
And in this very room there’s quite enough joy for all of us,
And there’s quite enough hope and quite enough power to chase away any gloom,
For Jesus, Lord Jesus … is in this very room.


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Derek’s Communication Development

Derek’s expressive communication was quite challenging for people to understand, more so than other sons I have shared about in previous posts. Although Ben, Alan, and Sean all have cerebral palsy and are non-ambulatory and nonspeaking, they have a bit more control over their physical movements and head control than Derek did. This allows them more selection of communication devices to express their wants and needs. They all use body language, facial expressions, and eye gaze in addition to AAC devices.

Derek was never able to access high-tech devices due to his limited physical control. He was never able to use pictures on his wheelchair tray because there was no way he could physically point to the pictures, and his line of vision was upward; he was not able to fix his eyes on lower things when seated in his wheelchair. To express himself, he depended primarily on body language and facial expressions, but one needed to know how to read and understand his movements to get an idea of what he was communicating. For example, his body would stiffen and this could mean a variety of things: discomfort, excitement, or dislike to mention a few. The “listener” would need to scan the environment for clues as to what he might want to communicate and then ask him YES/NO questions through ASL to clarify. Likewise, with his facial expressions, one expression could have various meanings.

Derek’s YES/NO responses were clear to me. I could detect a slight rise of his eyebrows, a broad smile, a grin, or sense of excitement for his YES answers. For his NO answers, there was a pout or turn of his head away or to the side and one other expression I can’t even describe. It was perhaps an expression we mutually agreed upon that meant NO. I began to recognize these idiosynchrasies at a fairly young age.

For more clear communication, “eye gaze” was Derek’s strongest strategy for self-expression. Eye gaze is when a person uses his eyes to direct attention to another person. This strategy is not always obvious. Derek’s eye gaze was clear to me but for others, they needed to understand and become familiar with his eye movements.

As mentioned in my book, DEREK, I did various tracking exercises and games with him to help strengthen his eye movements. Once he developed better control over his eyes and had a wheelchair, I made an e-tran from plexiglas. It could be bolted on his wheelchair tray for language lessons. As you can see, this e-tran had shelves and boxes where we could place objects. The center was left open so Derek could see my signs more clearly than if there was a solid middle. In this photo, I was asking Derek to identify the “cow”. You can see that his eyes are focused on the cow. We began with two objects and gradually increased to four and six as he learned to be consistent with his eye gaze.

When I felt Derek was ready to move on to a bit higher level of self-expression through eye-gaze, I made another type of e-tran. This had a shelf on the top and a space where I could tape pictures that coincided with the objects. This is what it looks like from Derek’s view. I once again left the center open so he could see my signs. With this setup I could begin asking him if he wanted a drink or if he wanted something to eat. This is the same e-tran from the opposite side and how it looks to the person Derek is communicating with.

As Derek’s accuracy using eye gaze and cognition improved, he was able to advance from using objects to using pictures with words and eventually to words only for which I do not have a photo. Securing the pictures and icons to the e-tran with tape was not the greatest idea. I wasn’t into using Velcro at that time either. I did find a small plastic trough that I was able to glue to the e-tran. It worked great with the pictures and didn’t leave sticky residue on things.

These e-trans were bulky and cumbersome to put on and take off of his wheelchair tray. They weren’t the answer to fluent, in-depth conversation, but the use of the e-trans did allow us to have a much better idea of what Derek understood in the educational setting. For all practical purposes, our daily communication was built on Derek using eye gaze in the present environment. I would follow his gaze and then ask him questions to make certain I understood what he wanted to communicate. These are examples of what were successful for Derek about twenty-five years ago.

The key is working with each individual and finding or modifying your approach to accommodate their needs. The websites below provide more information on eye tracking and eye gaze communication that might be of interest to you.

Today, there are a myriad of options for providing more fluid communication with our special needs children and adults. What works for you? Please share your innovations and stories.

Best Eye Exercises for Kids

Eye Can Learn

Communicate With The World Using The Power of Your Eyes

The Bridge School

The Pace Centre


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When some of my sons turned eighteen years old, I applied for conservatorship for them. All of them were still living at home and for various reasons were, and still are, unable to make some decisions on their own. I met with a lawyer to help with the paperwork and was investigated by the court before being appointed with limited conservatorship for my sons. The court does periodic reviews to make certain their needs are being met or whether changes need to be made.

Today I continue to be responsible to make certain these sons have appropriate living conditions, adult programs to attend, recreational and leisure activities, financial stability, and medical care. As conservator, I normally attend their annual meetings with the regional center social worker, day program, and group home staff. During these meetings, goals are reviewed, concerns are made known, decisions are made about their medical care and treatment, and end of life concerns are discussed.

Often I am contacted to sign forms for medical treatments, and so it was this week when I received an email requesting I sign forms and send a copy of my Letter of Conservatorship for one specific son. He was scheduled to have in-hospital dental care that required permission from me as his conservator for the treatment plan. I had no problem acknowledging he needed the dental work done in a hospital setting, but, this being a last minute request, I became paranoid about the time constraint. I had previously scheduled appointments for my sons still living at home. I managed to sign papers, copy other information needed and find a place to fax the papers in time so the dental treatment could be done on schedule.

Other times, I have been awakened during the night to be informed one of my sons has been taken to the emergency room. Then, I get another message I need to give verbal approval for whatever treatment is being considered. I’ve called doctors through the relay phone system using my TTY to give verbal consent. It’s a time-consuming process because there needs to be a second person from the medical staff on the line to witness the phone call. If at all possible, I go directly to whichever hospital my son has been admitted to and sign the papers in person. Since most of them live in a community I am not all that familiar with, I tend to get lost or not take the most direct route. A couple times we’ve had some scary medical events, but the guys fight off the infections or whatever and return to their group homes.

Recently, I have been considering the need to end my conservatorship duties for most of these sons, especially those who no longer live at home. Three have lived in care homes located locally for several years. Their needs continue to be met by others (although maybe not as I would do), but they have thrived where they are living. There are a few things I need to finalize before ending my responsibilities as conservator and I’d like to do this while I am still in a fairly good state of mind.

Once again I am working with a lawyer to find the best, legal way to go about terminating conservatorship. Because I am a limited conservator there are special rules for ending limited conservatorships.

*The limited conservator dies, (not my plan yet), or

*The limited conservatee dies, (not my plan either), or

*A general conservator is appointed, or

*A judge ends the limited conservatorship

I am not considering asking any of the more capable siblings to take over for me. I am looking into a specific agency that handles special needs trusts and conservatorships. However, my sons do not have trust funds and financially can’t afford to pay for such services. I do like what I have learned about this one agency. Of course, there are government agencies that provide a “public guardian.” However, the public guardian may have so many cases that it’s hard for them to give the conservatees the attention they may require or get to know them personally. This personal attention is necessary to help a conservator make the best decisions about the conservatee.

In California, people with developmental disabilities have rights to services they need. State services are provided by regional centers that are nonprofit corporations with contracts with the California Department of Developmental Services to serve people in specific geographical areas. If an adult with developmental disabilities does not have a conservator, the regional center will be assigned to make decisions for the developmentally-disabled adult. This is how it is for one of my sons. He seems to be doing well, but, sadly, I have never met his service coordinator. I understand the regional center workers have heavy caseloads, but I may need to consider this option for several of my sons.

I feel I have done a fair job of being conservator for my sons. At times, I think there might be better pull to have some services provided for my sons if they were under an agency that focuses primarily on conservatorships, especially in locating care homes to take over what I do today. I’m definitely in need of cutting back my workload as I age, but I certainly don’t plan to do that by dying, which would comply with one of the criteria listed for limited conservatorships.

What do other people do in this situation? Are you a conservator for an adult with a disability? Please share your thoughts and experiences here with us to help us all navigate this new territory.





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