Set The Glass Down

So many of the blogs I have read recently have been on the subject of stress, extreme stress. Maybe it's because I read a lot of blogs from parents of children with severe disabilities - maybe it's because we are deep in the heart of IEP season - or maybe it is because with Summer approaching, so many of us are wondering how to keep our children's skills on track until the start of the next school year. But, I'm right there with all of them.

My stress is indeed related to the severity of my children's disabilities. And, Ronnie's current school year started off poorly and has gone downhill ever since. But adding tremendously to my stress is my job. My childrens' health is holding steady for now and all their IEPs are done for this year, so things should be leveling out. But the stress at my job just seems to be increasing.

I've got to find a way to regulate the stress and keep my sanity and health from plummeting. And today I received an email that just may help me do that.

The email was from a friend who understands stress. He related a story from a meeting he had recently attended. The speaker at his meeting stood in front of the class holding a half full glass of water. She turned to the class and said, "I bet you are all thinking that I am going to ask you whether you see the glass as half full or half empty, but I'm not. I'm going to tell you how I view this glass and what it has taught me."

The speaker proceeded to hold the glass out at arm's length. She said, "Think of this glass of water as the stress in your life. Holding it out for just a couple of minutes is no problem. But the longer I hold it, the heavier it seems to get. The actual weight doesn't change, but my ability to hold it does. Finally, I won't be able to hold it out any longer, and it will go crashing to the floor."

"This glass of water is the stress in my life", she said. "The longer I allow the stress to hold on, the less likely I will be able to hold up to it. I must, if I am going to be able to hold the glass out, occasionally put it down. The same is true for the stress in my life and your lives. To be able to continue to function, you must occasionally put your stress aside. Whether that means taking a vacation, not doing your household chores for a week, going out to dinner and a movie with a good friend, or just putting your kids to bed an hour earlier, you must occasionally set your glasses down."

This analogy really works for me. Regardless of the amount of stress in my life, regardless of whether or not I feel parts of my life will not go on without my participation, I am going to start putting my glass down more. I will visualize the image of holding a half full glass out at arm's length, and I will choose to do something that helps me lighten that load.

What about you?

Need a Break

It's been a rough week and it doesn't look to be getting any better for the next few days. Hurricane Irene hit last Saturday and we have been without power since. Our power company now projects our power will be restored late Saturday night.

Four more days.....

I'm exhausted from not sleeping. I'm sick and I think Ashley is also. I'll find out when we go to the doctor this afternoon.

I'm tired of being hot, tired of not being able to do laundry, tired of our routines being tossed about and shaken up. It's not sitting well on any of us.

So, I need a break. I need to not do all my whining here. I need to just go away until it is all better. That will be when my power is back on....

See you again when the temperature inside my house is cooler than the temperature outside....

It Is Indeed Sherific!

Most days I don’t think about all that is involved in caring for my children with significant disabilities. I just do what needs to be done. Most days, everything gets done that should get done, and then we move on to the next day. But if it doesn’t all get done, I can get pretty stressed and feel like a not-so-good mother.

But I read something this week from Sheri, one of my favorite bloggers which helped me understand my feelings a little better.

On her blog, Ain’t That Sherific, Sheri was asked some questions from a new mother of a child with FAS (Fetal Alcohol Syndrome), and during the course of answering those questions, Sheri, also an adoptive mother, realized that as parents we are just as traumatized as our children with significant needs have been traumatized. It doesn’t matter that we weren’t around when the trauma was occurring. It moved into the family the same day our children did.

Intellectually I realize that, but I know that emotionally I have not accepted it.

One of the final paragraphs in Sheri’s post really hit home with me. She wrote, “We can advocate for our kids. We can fight for services. We can beg and plead for help. When it comes down to it, we are left alone to deal with the aftermath of the trauma they suffered as children. We can make it better, but it will never ever go away. My child's brain damage caused by alcohol in utero will not repair itself. We have to cut them some slack. Why shouldn't we cut ourselves the same slack?”

She’s right – we parents do need to cut ourselves slack. We need to realize that we do the absolute best we can, and we usually do it better than anyone else ever could. And even if we don’t, we keep trying.

Sheri, you have been an inspiration to me since I first ‘met’ you, and you continue today. Thank you for helping me see what is right in front of me.

My Heart and Yours

Yesterday Ashley and I were at our local Children’s Hospital for her semi-annual dental checkup. Not surprisingly, since it is commonplace at the hospital, we had to wait quite a while. Ashley was content to look through magazines, and I sat and ‘people-watched.’

A young woman, probably about 19 years old, sat not far away. She had a trach and severe CP. Her wheelchair was a mechanical marvel but she never moved. Every so often her mother would need to suction her, but when she wasn’t suctioning, her mother played with her daughter’s hair – twirling it, running it between her fingers, braiding it. All the while, she gazed lovingly into her daughter’s eyes.

In the seats behind us sat a young mother cradling her severely disabled baby in her arms. She rocked back and forth in the ‘baby dance’ all mothers are instinctively bred to do. As she rocked, she stroked her baby’s cheek with two fingers of her right hand.

An older gentleman walked toward those of us who waited. He was holding the hand of a young girl whose left arm was bent strangely and appeared to be of little use to her. She struggled to walk but the determination in her eyes said she would not give up. The man and the girl sat down, and the man’s hand drew circles on the girl’s back. She looked up at him and he looked back smiling, never stopping the stroking of her back.

The whole time I was watching, I had my hand on Ashley’s arm. I was very gently stroking her arm, almost oblivious to the fact that I was doing it. Every so often, I would weave my fingers into hers, and she and I would exchange a smile.

It seems we parents of children with severe disabilities must always be touching our children, almost as if we fear they will slip away if we don’t. The connection binds us together, and holds the unthinkable at bay. It is especially strong for those of us whose children have almost slipped away. Something deep inside, some primal urge to protect, keeps our children’s heartbeats, the warmth of their skin, and the rhythm of their breathing alive on the tips of our fingers.

There is no better feeling in the world.

Thankful Thursday

My Thankful Thursday post is late going up today. Why? I’m having a tough time concentrating on ‘thankful’ instead of ‘frustrated’.

I’m frustrated with my job – way too much to do in way too little time, and unfortunately the way too much to do keeps growing. I need a balance in my life and finding that balance in light of the ever growing workload is difficult.

I’m frustrated with our foster care system where decisions impacting the future of a small child are made by people who have never been parents and who have little to no clue about advocacy, medical issues, or support systems that have been present in society for more years than I have been alive (and that’s a lot of years!).

I’m frustrated with a school system that really doesn’t care no matter what flowery words they use in their mission statement. I’m frustrated that the same battles happen every single year.

But, I’m trying to convince myself that on a day like today, one filled to the brim of my soul with frustration, is exactly the kind of day where I need to list things for which I am thankful. So, for what it’s worth, here goes. Today I am thankful…

• For French fries loaded with salt and pepper


• For the warm, snuggly, cocoon-like feeling I experience each morning before having to drag myself out of bed


• For Miss Amy and all her wonderful ideas on how to put fun into Ashley’s life


• For children who smile at me as they walk past holding their parent’s hand


• For the gentle feel of Ashley’s hands on my cheeks as she moves my face to be inches away from hers


• For drivers who are polite and not impatient


• That Jessica will be coming home for a visit this Saturday


• That my son, Chip, smiled and asked me if I had a nice nap when I fell asleep on the couch last night watching TV


• For the blooms just starting to erupt on the Camellia bush by my front door


• That my children and I are well and happy almost all the time

Happy Thanksgiving

This is a tough year to be thankful. I’ve even stopped watching the nightly news because the continued talks about the failing economy, home foreclosures, layoffs and such depress me greatly. Yes, I am probably just sticking my head in the sand, but now, especially during the holidays, I don’t need to be depressed.

I don’t believe there is any person among us who has not been touched in some way by the grim economic situation this country is facing. But, I have to keep telling myself, and my sons because they worry also, that this is part of a cycle. Perhaps it is time for the greedy world of wants and not needs to get a wake up call. It’s hard though, especially for a child, when they haven’t experienced the full cycle before.

I do believe that as parents we need to make sure our children do not get too preoccupied and concerned with the gloom and doom. We can create lessons to be learned, but we, or at least I, don’t want to create anxiety.

So for today, let’s all find something for which we can be thankful. Be it small things or big things, I believe we can all find something. Share those things with your children, and ask them to share with you their list of thanks.

Our world, though troubled, is still a beautiful, special place to live and grow.

Happy Thanksgiving!

Nice While It Lasted

Sunday night - 5 hours of sleep - the most in a long, long time.

Monday night - 6 hours of sleep - I was ecstatic and felt good enough to run a marathon (almost).

Tuesday night - 1.5 hours of sleep - oh well, it was nice while it lasted...

Balanced?

What a weekend! There were several good things that happened, and several not-so-good things. Let’s see how the weekend balanced out…

NOT-SO-GOOD

Friday afternoon, one of the circuits in my home’s circuit panel went on the fritz. Every outlet on my kitchen walls, including the one into which the refrigerator is plugged, ran out of E-juice. My home warranty company said it wasn’t an emergency, and therefore it would be 24-48 hours (starting this morning) before an electrician could visit. They did inform me that I was welcome to call my own electrician and pay the weekend rates if I wanted.

GOOD

Amy agreed to store my fridge contents in her refrigerator, especially important because I have medicine that must stay cold.

Saturday morning, I went to the hardware store and bought a heavy duty extension cord – and before you ask, yes, we did have one – one that my son told me on Friday no longer worked – who knew a weedeater would cut straight through an extension cord. I plugged my refrigerator into the new cord, ran it out my kitchen window and plugged it into my outdoor socket. My house is so old that I don’t have three prong outlets except in my kitchen and outside.

The food was returned from Amy’s fridge and life was once again good.

NOT-SO-GOOD

Ashley visited the doctor’s office Friday afternoon and Sunday morning.

GOOD

Friday’s visit was to discuss possible treatment for reflux, not an uncommon thing for children with G-tubes. The pediatrician prescribed Zantac and told us to go visit the gastroenterologist. The Zantac seems to be helping.

Sunday’s visit was because Ashley’s cold/allergies which had been plaguing her for a couple of weeks took a turn for the worse. She didn’t sleep much at all Saturday night because of coughing, and when she woke up Sunday morning, she had a fever of 101. Fevers trigger her seizures and by 7am, she had already had two.

Antibiotics were prescribed and by this morning, Ashley seemed to be feeling a tad bit better, and she has had no more seizures.

NOT-SO-GOOD
We picked Corey up from the two week camp he had been attending, and had to leave the windows open in the van on the trip home due to the camp ‘aroma’.

GOOD

All his dirty clothes and bedding were washed by early afternoon and put away.

THE BEST

Sunday, I made three apple pies (with my state fair award winning recipe) – two for a party at work, and one for us at home. Yummy!!

Okay - the GOODs win out this weekend!

Lost Then Found

We live in a society that seems to have forgotten the virtue of patience. We have drive through fast food, drive through banking, and drive through pharmacies. A great deal of our shopping is done online, and we don’t even have to spend time driving to and from the mall. We TIVO shows on television so we can watch them when it is convenient, and while watching them, we fast forward through all the commercials. We cook a lot of our food in microwaves because it is faster, and we often buy whole meals, precooked, at our local markets. We rush through schedules and plans, keeping calendars that are so full of appointments that we often can’t even read what day it is. In fact, I personally have to schedule my down-time just so I can be sure I get some. But there is one place where having patience has really paid off for me – raising my son, Corey.

I’ve written about Corey three times in the past. First I introduced you to his early life, life before he joined my family. Then I talked about his Eeyoreness, and finally I wrote about his idiosyncrasies. But now, almost three years since he joined my family, I believe Corey is changing for the better.

He seems more settled into his skin these days. He seems happier, except when teenage angst takes over as it will with any teenage boy from time to time. He is getting better grades in school. He has a girlfriend and from all reports, seems to be handling his first boy-girl relationship better than most 15 year old boys. He remembers his chores – most of the time. His personal grooming habits are improving. He seems to be sleeping better. But the one thing that told me a change has really taken place in the life of this once-lost boy is what he wrote in my Mother’s Day card.

Inside the card which he had made for me were the words, “thank you for always being there for me. I love you.”

Yes, patience can pay off – in many wonderful and unexpected ways.

TGIF

By the time Friday arrives, I am exhausted. Too much to do at work - too much to do at home - not enough sleep - a little Lupus and Rheumatoid Arthritis thrown in for good measure - and I am really dragging. Seems Ashley has a similar problem. Her exhaustion is probably due to having to work really hard at school, especially on vision activities (imagine trying to read a novel with your one good eye one inch from the page and reading one word at a time), her after-school therapies, and the fact that she still has 2-3 seizures a day.

We both love the weekends. We lay around in her bed a lot. We take naps. We turn into slugs.

But the picture above says it all. Ashley was watching the Today Show at 7:30 this morning, waiting for the bus to arrive. Of course, to see the TV screen, she must sit directly in front of the tv, about an inch from the screen. I normally sit beside her and watch fractured little snippets of Matt and Meredith. I got up to retrieve something from my bedroom, and when I came back, Ashley had fallen asleep with her head in my chair.

Yes indeed, we are both very glad that it is Friday.

The Injuries We Do

"The injuries we do and those we suffer are seldom weighed in the same scales."
Aesop

TV, radio, and print media have been full of stories about the worsening economic crisis. Most of the stories focus on the housing market, and how high the number of foreclosures are. I believe there are many other stories in the U.S. that reflect the effects of our poor economy, but those stories don’t often get coverage.

I heard on a local radio station this morning that huge numbers of children are entering the foster care system in the southwestern part of my state. Why? Because their parents are manufacturing and selling methamphetamine to try to make their house payments. Always an area of lower economic means and high meth use, the fact that things are getting much, much worse is very telling for this part of the state. The economic crisis can now be held responsible for increased meth production and addiction and for the dissolution of families, as well as for loss of homes.

Another sign, at least to me, as to how bad things are getting, is the increased numbers of people I see shopping at Goodwill and other second-hand stores. My oldest son and I make frequent trips to our local Goodwill store in search of music for his record player. Being the free spirit that he is, Chip would prefer to listen to old 33 1/3 vinyl records than to compact disks. He claims the music is ‘richer’ on the vinyl. Until the last 6 months, whenever we were in the Goodwill store, which was usually on a Saturday, not many other people were shopping there. That is no longer the case. When we visited last week and yesterday, the parking lot was full, the store was crowded, and the check-out lines were as long as any line in a WalMart. Entire families were shopping together, gathering clothes, toys and housewares. Being forced to shop at Goodwill rather than a deep discount store such as Walmart is also very telling of the current state of the US economy.

The final, and most heartbreaking, sign of how bad things have gotten was revealed in the faces of the homeless family I passed yesterday afternoon. The family was composed of a man and a woman, and three children, the oldest of which was in a wheelchair. They were all carrying garbage bags full of what appeared to be their meager belongings, and bags were also tied onto the wheelchair handles. I see lots of homeless people in our downtown area, most of them, however, are men or women alone, wandering the downtown streets of the city in which I live. This was an entire family, and they were walking the sidewalks of the suburbs, about 15 miles from downtown. Their utter despair was as evident in their slow, burden-heavy pace as it was on their downcast faces.

The next statements I write will be political in nature. If you do not want to hear about my political views, I suggest you stop reading now.

Our economy has been plummeting the entire time that the Republicans have been in the driving seat of this country. Young men have died in record numbers in Iraq – families have lost their life savings and the security they had planned for their retirement years. Legions of families with young children are suffering and the outlook continues to worsen. Might it be time for a different driver?

How?

Candice from the I'm Adopting a Child with Usher's blog asked me some questions the other day, and I promised her I would blog my answer. Candice asked:

I have a question for you that I have found difficult lately. I know that you are a single working mom, how do you do it? Since we have had Rebecca, I can barely get in a 30 hour work week & I know that my coworkers are getting sick of me taking off all the time.

How do you work and have special need kids? Is your job understanding? What were your hardships, if any, with this?

I especially liked the part of the question “What were your hardships, if any…”. Believe me, the hardships are many and ongoing. I don’t think there has ever been a time when being a single working mom, especially with kids that have severe disabilities, has been easy. But, I have found some techniques along the way that have helped me remain sane. I’m happy to share these and hope maybe someone else’s journey through motherhood might be made a little easier as a result.

First, just a little background info. Most of you know I have 4 kids, three who have disabilities, and those three are adopted. My oldest son is 17 years old and is my birth son. The other children are 17, 15, and soon to be 13. I have worked for a state government agency for the past 22 years in the computer field, and with a little luck and an upswing in the economy, I will be able to retire from that job within the next 10 years.

When I adopted my first child, Ashley, I took her from her foster mom’s home straight to a visit to the neurologist. One of the first things he said to me was ”You must have quite an obsessive/compulsive personality.” I chuckled, but at the time didn’t really understand why he said that. Now I do. Those obsessive/compulsive tendencies have been a real source of strength for me along my parenting journey.

OK, here’s what has worked for me:

• Organization. I resolved early on to keep all important paperwork related to my children neatly filed away and easily accessible. It took some time in the beginning to work out the best filing system, but now having it in place takes almost no time at all to keep paperwork organized. I set up a filing cabinet per kid. There are places for adoption paperwork, medical history, reams of school documentation, and then a whole drawer for memory items. I have major categories within each of those areas, for example, IEPs, assessments, etc. or vision testing, audiological reports, etc. So, when I need a piece of documentation, I know exactly where to look – and that is quite a time saver.

• More organization. I find that even the little things like going to the grocery store each week can be a challenge. I certainly don’t want to take all the kids with me. If I did, we’d probably be eating nothing but Cheetos and chocolate chip cookies. But, paying for a babysitter so I can go grocery shopping just increases the grocery bill in a way. So my challenge is to get what I need from the store and get it quickly. If I can do that, I can do my grocery shopping at night after the kids are in bed (leaving my oldest in charge), or even on my lunch hour during the work week. To accomplish this, I prepare a menu of dinners for each week. I list the main course as well as the sides. I make that menu based on what is on sale at my grocery store each week. I check their flyer online, make my menu, and from that, make my shopping list. I make sure the shopping list is organized (there’s that word again) the same way the store is laid out. That means I make one quick pass down each aisle, pick up what I need, and get out and back home.

• And even more organization. One area of family life which can cause a lot of problems and could seriously affect meeting schedules is getting ready for school in the morning. I don’t have time 10 minutes before the bus arrives to be searching for shoes, socks, last night’s homework, etc. So, each school night, each child must pick out what clothes they want to wear the next day, put those, along with their socks, shoes and a jacket if needed on the far end of their closet, ready to be snatched up in the morning and thrown on. Also, backpacks must be packed and lined up at the door. Lunches need to be made and stored on the refrigerator shelf, and each lunch sack is a different color so no one gets the wrong lunch. Any papers which might need signing, or money that is needed for a school outing must be requested the night before. It only takes missing one field trip for a child to learn this schedule.

• Chores. Each of my children, no matter their disability, has chores to complete. It’s just a fact of our family life that everyone needs to pitch in to make things run more smoothly. The kids have learned that if things run smoothly, mom is happier and there is more time for fun. In the beginning, I provided chore charts so no one would forget what their assigned chores were. It didn’t take long for those charts to disappear as each child’s level of responsibility grew. Corey is responsible for taking trash and recycling to the curb weekly, filling the pet food dishes, and cleaning one of the bathrooms. Chip is in charge of yard work, heavy home maintenance (things like cleaning gutters and touch up painting), moving things to and from the attic and shed, and washing the car. Jessica and Ashley have to straighten up the family room each night before bed and help with meal prep and cleanup. Each child is responsible from the age of 12 for doing their own laundry. I assign days and times for each one to complete their laundry so they are not all vying for the appliances at the same time.

• Medical "things". One of the hardest things for me as a single mom is getting each child to their medical appointments, and I’m talking a lot of appointments given the severity of their disabilities. Over the years, I have gotten a little better at this. I found a pediatrician’s office that has hours into the early evening and on the weekends. That means less time off from work. For other doctors, I try to schedule their appointments as late in the day as possible, again meaning less time off from work. For visits to places like the eye doctor or dentist, where each child has to go, I insist on back-to-back appointments all in the same day. That is much better than taking time on four different days. I have tried to schedule the therapy appointments for both girls at the same time so that one could be having physical therapy at the same time the other was having occupational therapy. All this takes some advance planning and guarding my master calendar like it is gold, but for me it has been well worth the effort.

• Extracurricular activities. Since the kids all want to do activities other than school work and chores around the house, I have also had to figure out schedules for that. I do have a rule that each child cannot be involved in more than one extracurricular activity at a time, and it really helps if two or more can be involved in the same activity. For example, Ashley likes swimming lessons at our YMCA. While we are there, the boys can play basketball or pool, and Jessica likes taking part in teen craft activities.

• Schedules. I have taught all my children from an early age how important schedules can be (there’s that OCD part of me again). They get up at the same time each day, eat meals at the same time, get shower time in the same order and at the same time each day, and go to bed at the same time each day. I believe that for children with special needs, such a structure and routine to their days helps cut down on anxiety and meltdowns. And, the most important part of all this is that I make sure I work some ‘me’ time into that schedule also. The kids go to bed pretty early, at least on school nights, and I have an hour or two to myself to read, watch TV, chat on the phone, etc. It really helps me recharge.

• Medical emergencies. No matter how good a schedule we have, a medical emergency can throw a monkey wrench into everything. And, we have our share of medical emergencies. But, I even have a few techniques that help there also. For example, I keep envelopes on the back of the door which contains each child’s pertinent medical information and history. The document lists things like birthdate, address and phone numbers, insurance information, diagnoses, medicines and quantities, and every doctor’s and hospital’s address, phone number and fax number. Should an emergency occur and a visit to the hospital is needed, an envelope can just be grabbed off the back of the door. With multiple kids, keeping all the details in my mind wasn’t working, and I didn’t have time to go to the filing cabinet to retrieve information.

And then finally, there are two really big things that help me and my family make it through the week, and help me keep my job even though I have to take a lot of time off. First, I have help. After years of going this journey alone, I was finally able to lobby for and get Medicaid (the insurance my adopted children have) to pay for an aide for Ashley and additional help for Jessica. This help makes a huge difference. I have written many times about Amy, Ashley’s aide, and about what a wonderful and valuable part of our life she is. For any family who has children on Medicaid, I urge you to pursue such services. Don’t get discouraged if you are turned down the first time. Keep fighting, and learn all you can about your state’s available services.

The other thing that makes a difference for me is my job. Having been employed at the same place for so long, I do get a lot of vacation, sick, and family sick time. I still have to budget that very well to make it last through a year, but so far I have not had to go off payroll. And, being in a computer job, I am able to work from home sometime. I am very, very blessed to have this job and for the fact that my supervisors are flexible and understanding.

I think those are the high points. Boy, Candice, when you asked the question, I bet you didn’t realize I would get so wordy. Talk about efficiency, you have now just spent an inordinate amount of time reading all this. At least I hope it was worth your time!

A Weak Week

Sometimes by noon on Monday, I just know I am facing a difficult week. Unlike the weeks where the difficult times sort of sneak up on you on a Wednesday afternoon, the really bad weeks announce their presence first thing on a Monday. This is one of those weeks.

It’s usually not just one thing that puts me on high alert – it’s the combination of things, coming one right after the other. The car’s check engine light comes on during the morning commute. My youngest son forgets to tell me about a physical form that MUST be completed by Tuesday morning. Someone is in my reserved parking spot at work. The cat has thrown up in the middle of the night – I know this because I step right in it when I get up in the morning. Amy, Ashley’s aide, is significantly injured by another child at school and now has her hand in a cast. One of the main computer servers at work crashes and all eyes look to me to fix it – a job that takes approximately two hours, but a job that everyone wants done in 30 minutes. And this all happened before lunchtime on Monday.

I won’t even start a list of Tuesday and Wednesday, but just for the record, things didn’t get any better. It’s now Wednesday night, and all I can think about is that Thankful Thursday is going to be a challenge this week…