Driving Mr. Kyle, Mr. Kolya, Mr. Sergei, Mr. Alan, Miss Emily, and…and…and…

I got my drivers license when I was 16 years old. That was 47 years ago. I’ve always enjoyed driving and I have driven thousands and thousands of miles since I learned on our family’s two cars – an old push button Rambler and a stick shift Chevy Nova – both without seatbelts and not-so-adjustable seats! I bet some of you have no idea what a push button car is and maybe have never heard of a Rambler. Well, the push buttons took the place of the gearshift! I can say I dearly loved that old Rambler.

Once I had graduated from college, I’d pack up my car on the spur of the moment and take off to visit family and friends. There wasn’t much to keep me from traveling freely. I loved driving through the mountains of West Virginia and Pennsylvania. Driving through big cities like New York City and Pittsburgh were more challenging and scary, since I’m a small town girl. My town had no stoplights, bridges, four lane highways, tunnels, or any skyscrapers; just a stop sign here and there. At the time I wasn’t too bright about reading maps and following road signs, but once I got the hang of it, I could arrive to most places without much hesitation.

When I adopted my first son, Derek, we traveled extensively. I don’t know how many times we drove cross-country but we loved to travel together. He was observant and we’d stop to enjoy scenery. Even after Rusty and Ben joined my family, we continued to travel. They weren’t so much interested in looking out the windows but I figured a way to entertain them with cassette tapes and asking Ben to judge the volume by asking – “Can you hear that back there, Ben?” as his wheelchair was belted to the floor behind my driver’s seat. (I didn’t have a radio in my vehicle at that time since I couldn’t hear it.)

I’ve had my share of traveling woes over the years. I’ve had flat tires, an exploded muffler, an empty gas tank in the middle of nowhere in Montana (gas gauge was off), I dragged a tailpipe through a town without knowing until I noticed people were pointing at my car, and, and, and…

The first big incident is when Rossie and I traveled from West Virginia to my parents’ home in Duke Center, Pennsylvania, for Thanksgiving. We had a wonderful visit but on our return trip to West Virginia, we became stranded in a snowstorm. I had to pull off the road because I couldn’t see due to the blizzard. We were able to find a church that was open and had set up a place for people who were stranded like us to spend the night. That night Rossie and I …and our dog…were grateful for the shelter. Fortunately, the next morning we were able to continue on our journey home.

Another disaster was when Ben, Alan, Derek, David and I were on our way to Los Angeles. The radiator overheated and caused us some headache. I pulled over, got out, and waved at everyone who went by. Finally a friendly trucker stopped and assisted by calling a tow truck company. It was hot and dry. I tried to keep everybody hydrated while we waited. Once the tow truck arrived we thanked the trucker who went on his way.

“What seems to be the problem here, lady?” asked the tow truck driver.

“Seems like the radiator,” I said as it whistled and dripped fluids. “The biggest problem is my four sons in the van in wheelchairs.” I continued.

“We’ll have to get them out but I don’t know who to call to help with this,” he said.

I showed him there wasn’t room to get them out because of a retaining wall. I explained their chairs were belted to the floor, each son had on a seatbelt, and they were safe as they were. I repeated this a couple of times and despite Derek’s heavy breathing, I persuaded him to tow the van with us inside. Off we went to a garage with the front end of the van lifted high. Everyone leaned to the rear, bouncing around as if we were on an amusement park ride. After a new radiator was installed, we continued our journey to Los Angeles.

The last of my long road trips was when Kyle was a member of Starfire, the high school church choir. Kyle could not have toured with the group during the summer had I not been able to drive the wheelchair van and follow, or be sandwiched between, the caravan of tour buses. Do you know how fast tour buses go? Yikes! Faster than I normally drive. There were two tours, the Rocky Mountain tour and one the next summer that went up the west coast into Vancouver, Canada. This way of traveling was different because we were with a large group of people who needed to stay together and on a schedule. I couldn’t mosey along enjoying the scenery, which I love to do.

Things have changed and I do a different kind of driving today. Mostly I drive locally within a 30-mile radius to the grocery store and pharmacy, and to take my family here and there. Last weekend I drove Sergei to the reservoir to fish and then picked him up when he was finished. I picked up Donald after his five-day stay at camp. I’ve driven Kyle to Stanford for a medical appointment and to school a couple of days when his chair batteries were low. Alan had to get to a wheelchair appointment. Emily had to get to church and back for choir practice. (Tomorrow I will get her from gymnastics while her mom is at work.) Thursday I drove Sergei to San Francisco airport for his trip to Houston.

Yesterday morning I was up early to drive Kyle and his friend to work. Two unplanned trips were because Peter’s wheelchair was on the blink. I helped him transport to work a larger chair that wouldn’t fit in his van. I went back and got the chair when he finished. When Kyle works, I usually fall asleep on the couch and wait for a phone light to flash to let me know Kyle is finished working and needs a ride home. This can be at any insane hour between 11:30 PM – 1:30 AM! I’m glad the 10-mile drive is a fairly direct route. Of course there are stop signs and stoplights but close to no traffic at this hour. It’s a time of day that I normally don’t travel. I see wildlife – raccoons, opossums, rabbits, skunks and black cats – that love to invade my gardens! Sometimes the stars are out and the sky is clear. The real treat last night was viewing the “supermoon” as I drove to bring Kyle home and put him to bed. I’m so happy I don’t often need to drive Peter any more because his work hours at the movies are something I just couldn’t handle!

Today, I don’t drive a push button Rambler or a stick shift Chevy. I have two nice wheelchair vans: an extended body, high top 350 Ford equipped with a lift and wheelchair tie downs; and a Dodge Grand Caravan with a lowered floor and a wheelchair ramp.

When the boys were in public school, most of them had transportation if they received support from the special education departments (some could have used buses but chose to NOT take advantage of this because it was embarrassing or too time consuming). Even if they had transportation to the regular school day classes, there still were times when they’d need to be driven in the wheelchair vans for various field trips, dances, musical performances, and so forth. I remember when Tim was playing snares there were early morning rehearsals and many fall competitions and of course carpooling was not an option. The same for Kyle when he was in Madrigals and the holiday season was upon us. Sometimes this music group had more than one performance a day between November and January. I needed to schedule everyone’s appointments around Kyle’s Madrigal times and manage to be home to meet the buses in the afternoons. Sometimes I would have to drop him off and then go back and pick him up when he was finished.

Basically the same was true with church activities for choir, youth retreats, confirmation trips, and activity nights. This continues today, especially for Kyle who likes to go out and about for various social outings. Frustration can mount if I am not available to drive but we try our best to come up with a solution. Some of Kyle’s closer friends have gained my trust to drive our vans so he can participate in more outings. You see, carpooling just isn’t an option for my sons.

By now you must realize this is not just a matter of driving to a place and letting my sons open the door and hop in and out by themselves. These are wheelchair vans and the driver has more work to do than simply drive. Most of the time, unless a friend is along, I must open the door, lower the lift, load wheelchair on the lift, put the lift up, secure the wheelchair to the floor with tie downs, jump out, store the lift and close the door. Then I climb (I mean climb because I am short and these are large vans) into the driver’s seat and off we go. When we arrive to our destination, I slide out from behind the steering wheel, walk around the van, open the door, put the lift down, climb in to undo tie downs, let my ‘rider’ out, put the lift back up and once again climb into the driver’s seat.

I’ve not mentioned the mechanical problems that can occur with an adapted vehicle. There are many ways to modify the vans to work best for the physically challenged person. The more switches used to modify the doors and lifts, the more chances of mechanical and electrical problems there are. The large van I drive today constantly had dead batteries when it was new. It was so frustrating to have this beautiful new van with dead batteries. For some reason the interlock system for the wheelchair lift drained the batteries when the van was not in use. So, for more than a year, it was back and forth between home and the vendor to solve this problem. We finally decided to disconnect the interlock system and install an on/off toggle switch to be used only when we needed to use the lift. Whoever is using the van and lift must ‘remember’ to turn the switch off when finished or we’ll have dead batteries the next morning.

The summer when I drove Kyle on the Rocky Mountain choir tour, we had many problems with the lift (the on/off switch hadn’t been installed yet). For almost the entire tour, I had to jack the lift up and down with Kyle’s 300-pound wheelchair on it. This wasn’t just once a day but every time we stopped for meals, rehearsals, at tourist sights, and what not. Sometimes some of the high school guys would give a hand but most of the time I was the person jacking, working up a sweat and getting some blood into my brain. These lifts can be manually lowered and jacked like when you have a flat tire. Anyway you’d think I’d get thin from all this climbing, jacking, and bending but sadly it just doesn’t happen.

I still like to drive and one of these days, I’ll just pack up and take another cross-country trip where I can stop and enjoy the scenery. But now I’m yawning and I need to hit the couch because today I got up early again to drive Kyle to work. Thankfully it is only a summer job. I sure wish he could drive something other than his wheelchair. Would anyone want to donate a hands-free modified van? Or maybe even two?

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Aging Out of the Public School Programs

Kolya 'grad'Today, the last of my sons has aged out of the public school programs. Because special education programs have served him since he was three, his journey has been different than a student who was educated in the regular classroom, in that he could continue to receive services year-round, and until the age of 22 years. Although Kolya turned 22 years in February, he was permitted to finish the school year with his class.

This morning his teacher, Julie, led a small ceremony in his classroom. To my surprise, she had him enter dressed in a cap and gown! He proudly stood straight and tall next to Julie. She and another staff member said a few words, and presented him with his certificate of completion of the school program at Morgan Autism Center. Then, we were treated to a slideshow.

One of Kolya’s favorite activities is going to the mall. He has a favorite store where he heads to without any direction from anyone. Julie took him for one last visit to this store, Lovesac, and then all his classmates, classroom staff, and two other parents gathered in the food court to have lunch. Everyone chose from the different vendors in the food court. Needless to say, this is no easy outing with a group of students on the autistic spectrum but I must admit, everyone did a great job and was so happy.

What’s next for Kolya? He certainly will not be leaving home and going off to college. However, I feel as if I have been going through the same process most parents do to help their young graduate with the next step in life. I have spent much of the past couple of months visiting different programs for developmentally challenged adults and attending meetings on the best way to transition my son into a new program. There are not as many options for young adults with autism as there are colleges or vocational programs for the regular high school graduate. I visited six programs in our area: two that weren’t all that appropriate for him, two I believe could meet his needs, and two better ones that have waiting lists. Kolya is number 50 on one list — the other program already has 60 on its list so I didn’t even consider adding his name. Of the six programs, three are quite a distance from our home. Still two others where I already have sons enrolled, I didn’t need to visit, as they wouldn’t be appropriate for Kolya.

Most of the programs available for adults have a staff to client ratio of 1:3. One even had a ratio of 1:4 for some of their activities. Kolya’s education up until now has basically been a 1:1 ratio to monitor his safety (keep him from running away) and to help with his personal needs. Although at some point we may be able to decrease the need for 1:1 for him, I don’t think it’s wise to try this in a new program.

The Morgan Autism Center (MAC) runs the program I feel is best for Kolya. The adult program is located on the same site where he has been attending school. I approached the director of the Center in February with a request to allow Kolya to visit the adult program (AP) for an hour or so a couple of times a week. I suggested that one of the aides from his classroom take him to AP and make sure he was safe and to see how he could adjust to a much larger open space than he is accustomed to. It was agreed this would be doable and so the process began. Sometimes I received messages that things were going well and other times I was told things were not working out. I was totally confused. A meeting was called to discuss what might be the best solution. The staff was extremely worried about him running because of the larger space, doors next to fences that didn’t have gates, and not being supervised 1:1 at all times.

At first it was confusing for Kolya to go back and forth between his classroom and the adult program. He has always referred to MAC as school, but the adult program is not called school. After a few days he understood that when it was AP on his schedule, it meant going to a different part of the school site. He’s now becoming more consistent with correct terminology between ‘school’ and ‘AP’. I’m sure this will aide his transition and understand he’s with a different group of peers.

Here in California we have what are called Regional Centers. These centers provide funding and services for persons who have autism, cerebral palsy, and other developmental challenges. Kolya is with the Regional Center for our area and his social worker was included in the meetings and other communications. She also visited several adult programs to see which she felt was a good fit for him. Regional Centers provide funding for transportation and for clients to attend day programs. However, they don’t normally provide funding for 1:1 supervision, and I’m not in a financial position to pay for such a service.

Even though the MAC staff did not feel comfortable allowing Kolya to be a part of the AP because of the physical layout of the site (they were aware of Kolya’s behaviors, and that he would run away if he could), I made the point that regardless of whatever program he attended he would still need assistance to meet his physical needs as well as maximum supervision for at least the transitional time into any adult program he would attend.

They agreed to give him a 30-day trial period providing the Regional Center would fund a 1:1 aide. It appeared this had all been approved by the Regional Center. If the AP staff felt an aide would need to be present beyond the 30-day period, they must document the reasons, submit to the social worker, and another placement meeting will be called. The best news is there was an aide who already knows Kolya and was ready to step in for the trial period. So it looked like Kolya won’t have to wait for three years for something to become available like Ben did. Things were looking good for him to attend AP at MAC!

Until…

I receive an email from the Regional Center worker that the primary vendor for transportation will not accept Kolya because of previous behaviors on school buses. They must be reading reports from several years ago because recently there have been few problems with Kolya on the buses. To further frustrate us, our County paratransit will no longer come into the area of our house after 8:15AM. This could be a big problem should Kolya arrive at the day program early with no one would be available to supervise him upon arrival. The afternoon ride home looks more promising since the hours when the program ends and the hours the paratransit can be in our local area coincide.

Needless to say, I’m still stumped as to how Kolya will be transported to and from the program: I have two weeks to come up with a solution. Even on Saturday when the MAC staff has the weekend off, I’m receiving emails discussing how we might solve the transportation problem. MAC has been a great place over the past 15 years for Kolya. They’ve supported him from a young child through his teen years and as he grew into adulthood. It’s definitely worth the work to make sure they continue to provide a program for Kolya.

Wouldn’t you want a great place for your adult childKolya with Certificate with special needs to go?

 

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Ben Goes to First Grade

Hi! I’m Ben and I’m Going To First Grade!

Ben

Ben listened to his older brothers’ chatter as he watched out the bus window while riding to school. It was an exciting day for Ben and his stomach was full of butterflies. He was going to a new school and to first grade!

When the bus finally arrived at school and Ben got off, his good friend Linda was there to meet him. “Ready to go to first grade?” she asked brightly.

Ben gave her a broad smile and a nod. He surely was ready to go. Ben had waited for a long time to learn to read, and that was exactly what he was going to learn in first grade.

Ben and Linda went into the classroom. Excited, he began to search the room for someone he knew. At the reading area were a boy and a girl pointing at Ben. They appeared to be making fun of him. He was not sure he was going to like this class after all. It made him feel bad when people covered their mouths, whispered and pointed at him.

“Good morning, Ben. I’m glad you are here. We have much to learn in first grade and you will do just fine,” said Miss Reece kindly. She was Ben’s new teacher and had visited his home last week. He had been almost certain he would like Miss Reece’s class. She told him many things that he would do that year at school. It all sounded wonderful to him.

“Come children. Find your desks and let’s begin our day by meeting each other,” called Miss Reece.

Linda and Ben found his desk while the other children found theirs. Miss Reece went to the front of the room. “I would like for everyone to stand by your desk, tell us your name, and maybe a little about yourself, what you like to do and your age. I want you to become friends so you can play with each other during free time. Let’s begin over here,” said Miss Reece as she glanced toward a little girl with dark, brown wavy hair and freckles on her nose.

The girl shyly stood by her desk and said, “I am Katie. I am six and I like to swim.” She then sat down quickly.

Gee, Ben thought – I am six and I like to swim too. Maybe Katie will be my friend.

Jeff was next. He said he was seven and would rather be playing baseball than come to school. Then there was Peter and Michael and Joe.

Joe, that was the boy who had pointed at Ben when he came into the room. Ben wasn’t sure Joe would be his friend. He didn’t like people talking about him like Joe did.

Before he knew it, it was Ben’s turn. All the children turned and stared at him. The room was unusually quiet. He could not stand by this desk. In fact, he did not even sit behind it like the other children. Ben was in a blue wheelchair. He had blocks at his sides and blocks over his shoulders to help him sit up and a thing up behind his head. The wheelchair had a tray on it with a board sticking up in front of him. To really make matters worse and give the children something to laugh about, there was a light on his head. Ben had cerebral palsy, but he still could go to first grade.

Miss Reece asked, “Can you tell us your name?”

Ben nodded ‘yes’ and began to tell the other children his name. He moved his headlight to different places on the board. His friend Linda spoke, “B E N, Ben.” Then as Ben continued to move his head in different directions she said, “I like to swim. I am six. I want to have friends. I want to learn to read.”

“What’s the matter? Can’t you talk?” asked Joe with a taunting voice.

That did it! Ben was a little upset and now began to move his head again with a strong look of determination on his face. Linda spoke for him, “I talk with my communication board.”

Ben listened as Miss Reece asked Joe if he would like to be Ben’s voice. “Gosh no,” Joe exclaimed. “I don’t want to do that. My mom says not to bother people in wheelchairs. They don’t understand anyway.”

This made Ben extremely unhappy. He did understand. He had feelings just like the other children.

He looked to Miss Reece who decided to let it go at that. She told Ben what a nice job he had done talking to the class. She gave him a reassuring smile and went on to the next child. Linda also gave Ben a pat on the shoulder to let him know he did just fine.

When all the children had introduced themselves, it was time to begin some paperwork. Miss Reece gave the children papers and asked them to mark the picture that was different. Linda reached into Ben’s pack on the back of his wheelchair and got out a little helmet with a stick on it. She taped a crayon on the stick and propped Ben’s paper up on the board on his tray. She put the head pointer on his head. He began to mark his paper. Joe was curious and glanced out of the corner of his eye to see what Ben was doing. Imagine, writing with your head, he thought. How dumb!

After Ben had made several marks on his paper, he looked up and said, “Oouuu…”

“Yes, Ben. Are you finished?” asked Miss Reece. He again nodded his head for ‘yes’.

“Very good, Ben. They are all correct,” said Miss Reece after she looked at his paper. Then she explained to the class that Ben could not write and color with his hands, but he could mark his papers with his head pointer.

Joe was rather puzzled by now. Gosh, just think, having to write with your head. That must be hard, he thought to himself. Maybe Ben did understand what people said. Miss Reece said he got everything right on his paper too.

Soon it was free time. Ben asked Linda to take him to the reading area. Katie was there and Ben wanted to say hello to her. “Oouuu,” Ben vocalized. Linda told Katie to stand where she could see the light on Ben’s board. Katie slowly moved around his wheelchair. Quickly Ben put his light on a picture of a person waving and saying Hello. Linda spoke for Ben, “Hi!”

Linda told Ben she had to leave for a minute. She would be back soon for math class.

Ben wanted a book. He oouuu…ed again so that Katie would know he wanted to say something. She came over and he shone his light on some pictures –

Katie caught on fast and asked, ”Do you want me to get you a book?” Ben smiled and nodded ‘yes’. Katie picked out a book and put it on Ben’s tray. Ben smiled and pointed his light on img750

Although Joe’s mother had told him that people like Ben were different and not to get involved, he now realized Ben really did know what was going on around him. So, he decided to take a closer look at that chair and board. He had never seen a chair that had so many screws and knobs. Ben had his own pack for his lunch, sweater, light, head stick, books and toys. He had a special place for his feet too. When Joe looked at the board, there were so many pictures on it, even real pictures of Ben’s family and friends.

Ben needed help. So he said, “Oouuu…”. Joe was surprised to hear Ben. He was the only person around now. He got a little closer and watched as Ben moved his light on the board. The pictures said, img751 img752

Well, that was easy enough to figure out, thought Joe. Joe reached up to turn Ben’s page. Ben gave him a big appreciative smile and pointed his red light on Thank You.

Ben moved his head again while Joe watched. The light was on pictures that said, I Wantimg754?

Joe thought a moment. Oh yes, he wants me to be his friend. Joe considered the question and finally said, “Yeah, I guess we could be friends. Can I have my picture put on your board too with these pictures?” he asked as he pointed to Ben’s family.

Ben with communication board

“OOUUU…”. That made Ben feel fantastic!

Miss Reece had been watching Ben and Joe from a distance. She was pleased that Joe could understand Ben’s communication board and had changed his mind about people in wheelchairs.

“Children, please come to your desks. Time for math,” called Miss Reece. Joe pushed Ben’s wheelchair to his desk while the other children watched. “Ben and I are friends. He said I could even put my picture on his communication board,” Joe announced proudly.

The boys exchanged smiles. Ben felt elated about his new friend as he watched Joe walk to his desk across the room.

Soon it was time for Ben to go home. As he got on the bus, he thought, what a great day it was to be in first grade!

Ben getting on bus

Note:    This story was written in the fall of 1985 when Ben was starting first grade. This is an example of how low technology was used for communication before the computers available today were developed.
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Poop, Pee and Boogers

So, you think I’ve gone bonkers with this title? Maybe – but it seems like this is what is taking up my time this week.

I know most people are curious about what I do for my sons behind closed doors and the above title speaks loudly. For whatever reason, this week I have had a double dose ~ a lot more than usual.

For example, one of the guys is suffering from constipation. He’s had all his normal medications, plus some extra stool softener and lots of fiber for the past two weeks, but… where is the stool? Yesterday we decided we needed to attack the problem head on with several enemas, more suppositories, increase in stool softener and had almost zero results! Today has pretty much been a repeat of yesterday and hopefully sometime soon we will see a more positive result from our efforts to cleanse his intestine. Wish us luck!

Constipation has never been a personal problem for me and I had much to learn after I began adopting. Some of my sons have had great issues with the gastrointestinal system. I didn’t even know what a suppository was. When the doctor explained what, where, why, and expectations of suppositories, my first question was, “And you mean I get this poop all over my fingers?”

She probably thought I was hopeless at that moment but gently explained about using rubber gloves, which I had never done (she told me where to buy those too). Over the past 36 years I’ve come a long way in helping some of these fellows pass stool when they are in great discomfort. And as I write this, another son tells me he is constipated and needs a suppository too. So much for having a fresh smelling house in the morning!

I’ll inform you not all the guys have trouble passing stool. One day, I was bathing one of my quad amputee sons when he decided in the middle of a bath he needed to do number two. It just couldn’t wait! There was no time to dry him off and move to a different bathroom with an adapted toilet seat. Therefore, I proceeded to lift him out of the tub and hold him over a regular toilet seat, which was way too big for his smaller body at that time. Panic set in and I began urging him to hurry as he was slipping away (wet and nothing to give leverage to hold him snuggly without arms). “Mom, I’m trying as fast as I can,” he replied.

Well, there is a safe ending to this story, he completed the task of passing his stool before I lost grip of him. He didn’t slip into the toilet bowl. I hope he has forgotten the experience by this time in his life. At least I’ll not use his name here to embarrass him with my story.

I’ll be the first to admit I’m not into medical terms or trained to be a nurse or doctor but I do know how to give suppositories, enemas and even handle an appendicostomy (you can Google that one).

As for the need to urinate, that has never been a medical concern for me either but only an annoying issue at times. I just find it annoying that I am busy doing something and don’t want to stop just to take a run to the bathroom. However, I guess I shouldn’t complain when I know some of my sons have a different issue with emptying their bladders. Another new word in my vocabulary many years ago was ‘urinal’. Remember, I’m a small town girl who grew up with a severe hearing loss and had no exposure to such things. Of course this doesn’t mean all the kids raised in my area had no idea what a urinal was (my best friend became a nurse so she must have known), but I sure was one of them – clueless! So, I’ve become quite skilled in helping my guys use a urinal.

For some, this is easier said than done. It also means more lifting and pulling pants down and then pulling them back up when finished. However, for some urinating is not easy and they seem to have the urge to go but then can’t relax enough to go at the moment. I never used swear words until I lived with some of my sons who feel this is “normal and acceptable” vocabulary. However, this is one time I have begun to swear OUT LOUD; when I have to wait and wait and wait. Even after what is sometimes an hour, I am still waiting and at times I just give up. Frequently, I pay the consequence for not waiting long enough and then do some more swearing out loud. I must stop this habit! After all, I’m 62 now and should know better. I do know right from wrong!

And one last nuisance this week has been mucus for one who decided to get a cold. Why this week and not next? So, in addition to taking care of emptying the stubborn intestines and waiting for many bladders, I have also been holding tissues for a stuffed up nose. Isn’t it amazing I haven’t caught a lot of illnesses? Whew! I hope it stays this way.

I have to stop because there is another request that someone needs to use the bathroom now. Bye…but be certain to check back at another time for ongoing happenings in my daily life. These guys are my sons and I love them in spite of all the poop, pee and boogers.

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Less Shoving and Pulling Today

Shoving? What kind of mom is entitled to shove her sons every day? To be honest, I’ve done my share of shoving, pushing, pulling, lifting one leg then the other, grabbing an arm here and there, and rolling bodies back and forth over the past 36 years.

Less shoving and pulling today? Yep, a lot less because the weather has taken a turn and is warmer this morning. I’ve been waiting for this day for the past several months. No long-sleeved shirts and jackets to deal with. Whew, that day is today!

This might be difficult for you to understand but dressing some of my sons can become a physical workout for me. Each is a bit different but I still have to shove, pull and roll regardless of no need for jackets. The ones with cerebral palsy can be challenging, even when they are small. But these grown men are much heavier than they were years ago and I must use almost every muscle in my body to get them dressed.

So, when I try to put an arm through a sleeve, instead of pushing a hand through the armhole as you and I do, I must bunch up the sleeve, try to bend my son’s elbow, put my hand in and pull my son’s arms through. Needless to say, when I am trying to pull, their muscles usually are telling them to do the opposite! When dressing, it’s wise to start with the arm that is most affected (the one that won’t bend more easily). I normally don’t talk while I am dressing my sons because I feel it can be distracting and make them more difficult to dress. I have no idea if this is true but it’s the way I accomplish this task in record time!

Some are easier to put shirts on while on their beds and others do better if they are in their wheelchairs. Stretchy shirts are much easier but who wants to wear stretchy shirts every day? And…most are a bit less spastic when the weather becomes warmer. The weather forecast for all week is to be warm and I look forward to spending about five to eight minutes less in the morning dressing each son.

After you get the hang of what to do and what works best for the physically challenged individual, things tend to become routine. But you must remember to flatten pockets or they’ll be sitting on a bunched up ball of material all day. Same goes with tags in the neck of the shirts – it’s probably wise to remove them but I tend not to do so. Maybe tomorrow I should go through all the shirts and cut out the tags?

Socks can be another concern, especially for those who are spastic and push their feet in their shoes. I always try to make certain the seam on the sock toe is not rubbing. This has become a big problem for Ben and his toes became very sore and even infected one year. Now he wears open-toed sandals with socks and I make certain I pull the socks loose at the toes.

I still have to shove and roll quite a bit to do underwear and pants. Then of course deal with zippers and buttons or be lazy and use pants with elastic waistbands. However, that can make it more difficult to take them to the bathroom throughout the day.

Continue pulling and shoving – yep! I’ll continue but a little less for the next couple of months and my sons will just have to bear with me.

 

 

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Feeling Sorry for Myself Today

April 7, 2013

I recently got an email from a parent whose son is in Kolya’s class. She mentioned that Kolya was a STAR at the annual fundraising event that took place last evening for the Morgan Autism Center. She had attended the event and remarked that many times people were moved to tears while Kolya’s story was being shown on a video clip that was created at school. She made several comments and wanted to know what country he had been adopted from. I could answer only one question – where he was born.

Sadly, I had to answer that I had not seen the video. I had no idea what had been included. Even if I had seen the video I would not have been able to hear and understand what was being said about my son.  This type of experience has happened more times that you’d want to know.

Why didn’t I attend the event? First, one challenge would be to find someone to cover at home while I was out. Second, I’d have to purchase a ticket for the event for a sum that I didn’t want to pay. I also would have to go out and buy something to wear (I dislike shopping for clothes, especially something that I might only wear once). But mostly I didn’t want to go because I’d basically sit and have no idea what other people would be talking about at my table. For me, these situations are emotionally draining and I’d much rather just miss the event all together. I’ve sat through concerts that my sons participated in, graduations, award programs (including some that were for me), and even speeches my sons have given without having a clue what was being said.  So, I choose to stay home.

Do I have a right to feel sorry for myself on this beautiful spring day? I think so. However, I don’t allow myself to wallow these feelings for a long period of time. I usually try to take a moment to separate myself from “life” in the house: go outside and pull some weeds, take a walk around the block, or hide in the bathroom with something to read. So, I “just get over it” as some of my sons say and continue on with my day.

 

 

 

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My Visit with Dustin

April 17, 2013

Dustin photoYesterday I finally had a chance to visit my son Dustin, who lives in Santa Cruz. I know this might sound silly but it’s taken more than two years for me to find time to spend part of a day with him (it’s only a 40 minute drive from my home). Things just kept popping up: wheelchair appointments, doctor appointments, not enough time to make the drive to and from before I’d need to be home to meet a bus, someone was on vacation ~ and the list could go on forever. However, yesterday I made it!

I don’t know about Dustin, but I know I can say I had a great visit and a good burger for lunch. He talked and talked about recent discoveries in his life – finding members of his birth family. An aunt found him and shared her findings with his grandmother. They’ve sent pictures back and forth. Maybe one day they can meet in person. I’d love to help him do that but right now I just don’t have the time.

Dustin decided he should sit in the front and give me directions. So, we transferred him from his wheelchair to the seat, put the ramp down and rolled his chair in behind us. I could sense his pride of knowing where to go and giving me directions. His speech is hard to understand (even for a person with normal hearing) but he used his spastic, one-handed signs to make clear where I was supposed to turn.

Our relationship hasn’t always been positive. He came with many problems, things I’d had no exposure to before meeting him. He’d been born an active child until he experienced internal brain trauma. The result of his trauma left him with poorly controlled seizures, unable to sit, walk, eat or speak. It was difficult to know if he understood anything as he had a blank stare much of the time. However, one day he got me to understand he wanted the bacon I had for breakfast. So, bacon it was-crispy, salty bacon.

Dustin continued to make slow improvements over time – he can help some with his transfers, has some use of his left hand to feed himself (he’s learned to eat again and his feeding tube has been removed), play video games and drive a power wheelchair.  He has regained speech, although it’s mostly unclear to people who don’t know him. And like yesterday, he used his one-handed signs to help me out.

Dustin became very social during his middle and high school years. With many dedicated teachers, he was able to graduate from high school.

Dustin definitely has made some choices that I never approved of, and still have a hard time accepting. But he seems to be happy, friendly and a survivor. He has a house, a cat and caregivers who help him out. And most of all, I felt so relaxed and happy to be with him yesterday. I just hope it doesn’t take me two years to drive to Santa Cruz again. He calls me mom and  he’s my son.

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Sanctuary Among The Hills

About three feet from the muddy banks of the ordinarily shallow creek in the unmown field, I lay underneath two scrawny crabapple trees. Here was a sanctuary that held beauty every season of the year: greens that glistened in the brilliant summer sun, blazing colors of autumn, and ice-coated bare branches above waist-deep snow of winter. But today I rest as I relish the pleasures of a late spring afternoon with my frail-looking pet Friskie by my side. It is this beloved spot where the earth has molded to the shape of my body and that of my dog. Here I could find peace of heart throughout my youthful years.

Only a couple of weeks earlier there gnarled branches were covered with infinite unopened buds. Now, as I glanced up, they were proudly displaying their clothes of pea-green entwined with scattered blossoms of every hue of pink. It appeared that a fairy had painted these snowflake-shaped blossoms with various shades of milky white, crimson to deep maroon. Not only were they a sight to behold, but also these delicate flowers were velvety and silky to touch. Their fragrance was sweet as it perfumed the country air.

These two trees with branches twisted and spread in every direction and length were so unshapely. They were no comparison in regard to height or form to the stately evergreens that towered above our house. Yet, they were just as lovely to me.

Across the creek I scanned the hillside now clothes in its robe of greens. I know well that coves of evergreens, maples, elms and oaks dominated the upper portion of the hillside. In the clearing I attended to the unbroken rhythm of the seven horse-like oil jacks rising and lowering as they pumped petroleum from deep wells beneath the surface of the fields at the foot of the hills. Narrow metal rods, connected to the pump house nestled snuggly into the hillside, ruled these oil jacks. Constructed of tin, the weathered side of the pump house was dull while the remainder shone in the glorious afternoon sun. It appeared quaint surrounded by daisies, lady slippers and other wildflowers for which I know not their names.

I cherished the now swollen creek. The spring rains, along with the contribution of melted snow from the hilltops, had caused the cold water to swell to the brim of the banks. How it stank if you were not accustomed to the odor of this precious black gold! I marveled how beautiful the moss-covered rocks appeared beneath the rainbow-colored circles of oil that oozed into the water. Small bullhead minnows swam joyfully without the fear of humans needing them for bait. I had the desire to join them, if only the water had been deep enough. They didn’t seem to mind when I moved some rocks and made a stepping stone path to cross to the other side for hiking up the hillside.

This is my sacred place in the world of nature. For here, no words are necessary to fulfill the cycle of communication. No sounds need to be heard to appreciate life. Here, the elegance of our priceless universe is plentiful to one in need of relief from the pressures and frustrations of daily life. This is my sanctuary among the hills.

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Easter 2013

Today I arose at 5:45 not to hide Easter baskets filled with candy and colored eggs but to get Kyle up and ready for the Easter sunrise service. It was all I could do to drag myself out of bed in the darkness of my bedroom. But, as I slowly headed to Kyle’s room, the bright moon that shone through the skylights and sliding glass doors of the house lighted my dark path.
The first words to me today were not “Good morning” or Happy Easter” but “You scared the crap out of me!” as I awoke Kyle who was in deep sleep. Just what a mom wants to hear so early in the morning, especially when the request before I went to bed last night was to “Get me up early if it is not raining.” Sigh….. Still half asleep myself, I got him dressed, lifted his 115 pounds into his wheelchair, bundled him up and opened the door so he could drive his wheelchair to the church in the dark. I hope he enjoyed the Easter Sunrise service with his friends. He’s not mentioned anything about his morning.
As I made myself a cup of coffee, my BlackBerry signaled I had a new message. My heart skipped a beat as I opened the message of “Happy Easter to all the family and have a great day” from Rossie. Rossie is my foster son of years ago. We’ve not seen each other since 1985 and lost contact until recently. Memories of many wonderful (and some tough) times came to mind. How I would love to be able to reach out and give him a hug. I hope one day this will actually happen as we sit face to face in the same room and catch up on events all these years. Easter brings hope.
After I got all the guys up, dressed and ready for their day, I head to church with some of the family. Here I was able to take a brief break from the grinds of daily life ~ until the end of the service when everyone stands to sing the Hallelujah Chorus. Suddenly, Kolya (the child who used to throw his shoes at the preacher, scream when a piercing pitch from the organ or trumpet would cause him pain, refuse to stand for hymns, and many others inappropriate behaviors) stands tall beside me. His body shook as he leaned to me and asked for help. The music was too loud. I couldn’t cover his ears for him. He’s too tall. But I placed my hand on his back hoping to help in some way. I kept whispering, “Just a little more and this will be done.” He did it. He managed to get through the music and without throwing his shoes. Without screaming! I felt proud of what he has accomplished as a person who lives with autism. I’m glad I’m his mom. I’m thankful he found his way into my life.
The darkness of early morning changed to a beautiful day. The wet grass shone after a night of rain. My flowers are in bloom and standing tall. It is Easter, the birth of spring. Will tomorrow be Easter? Maybe not on the calendar or where I must arise early to wake up to “You scared the crap out of me!” But the Easter season will continue in my heart: a season of joy, a season of hope, a season of new experiences, a season of fulfillment in life.

Happy Easter

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