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?

Wanting a Bigger World

Life can be pretty isolating when one has a disability. And by extension, mine has become that way because I have children with disabilities. While many disabling conditions have their own 'groups', the Autism Society for example, I have yet to find a group made up of children with Spina Bifida who are also profoundly Deaf, or children who are deafblind, have seizure disorder, ADHD, and feeding problems. And if one doesn't fit in a "group", other than the group called disability, options for socialization are even further reduced.

In some ways it's not bad to be isolated. My children and I don't have to endure the stares, the looks of disgust, the stepping aside as if what my children have is catching, the 'awwws' of pity, or the ignorant comments and questions (I don't mind non-ignorant comments or questions). There's a warm comfort to be found within the walls of our home where we are all just people, family members, valuable human beings. But every so often, the isolation is stifling and I long for a bigger world than that to be found in our personal 2400 square feet.

Last night was one of those times. I wouldn't say I was depressed, but I was a little bit sad. I miss the impulsive moments of jumping in the car to head to the beach boardwalk or the night out to try out a unique new restaurant. Nothing can be impulsive and spur of the moment anymore. We have to know if a place is wheelchair accessible, if there is kid friendly food available, or if there are medical facilities close by. We even have to decide if we think the other patrons at our outing will be accepting of our differences.

Please don't infer that anything I have said means I regret my decisions to build my family with children who have significant disabilities. Because there is absolutely no regret, and in fact, I want more children with disabilities. I just wish the world was more accommodating, and that we could all be a part of the whole and not just savor our slice of the pie.

To quell my sadness last night, and to feel once again the magnitude of the world, I stepped out onto our deck. It was dark and the stars were out. The only sounds were the sounds of neighbors going about their evening routines, the birds settling in for the night, and the barks of family pets wanting their dinner. I closed my eyes and imagined I was standing on the shore, hearing the waves crash and feeling the salty wind touch my cheek. I took a little 'trip' to the beach and it was wonderful. My sadness lifted for the moment...

Just and Loving?

It’s tough to ‘keep the faith’ when one experiences a lot of negative things in their life. And often it seems like the negative things just keep piling up and up. You know, the thought that a lot, if not most, believers have at some point in their lives – ‘Why does God let bad things happen to good people?’

When I have had those moments, I tell myself to just trust that all that is happening is part of God’s plan and to just believe that there is a purpose to the turmoil. But, it gets very hard to remember and believe that when the bad things happen to an innocent child, and especially hard when bad things continue to happen over and over again through no action of that child.

For instance, children like mine and others with severe disabilities did not ask to be born they way they were. It was through the actions of their birth parents – drinking, drugs, no prenatal care, etc. – that their lives were determined. Innocent children who had no say in their future…

I can perhaps accept that at some spiritual level by going back to having faith when it seems God has a plan. What I can’t accept is when bad things continue to happen to these innocent children. Wasn’t it enough they were born with their disabilities – why must they be afflicted with other negative things beyond their control?

For example, these vulnerable children are subject to stares, bullying, exclusion and a host of other actions by people who ridicule them or think of them as less than ‘normal’. The parents of the children must battle every step of the way to ensure their children receive appropriate educations when teachers often ignore or exclude them, or just don’t believe they have any ability to learn. Or, there are the professionals (and that term is used loosely) who insist you prove over and over that your child really does have a disability, disabilities like deafness or blindness that seem nothing if not obvious. These children have to endure bus drivers and aides who treat them like animals, people who equate a physical disability with a decreased capacity to learn and understand, and neighbors and sometimes extended family members who act as if that child has something contagious. People speak about these children, not to them. They support them without befriending them. They suggest interventions and treatments to ‘cure’ them or make them more ‘normal’. They are very often treated less like human beings and more like creatures to be contained, trained, and locked away.

This is where my faith begins to crumble. It’s like kicking someone when they are down. These children bear enough of a burden from their disabilities – why must they further bear the burden of cruel or unenlightened people? Why does a merciful loving God allow that to happen, and especially allow it to happen over and over again?

These thoughts have invaded my mind even more now that Christmas and an increased spiritual environment are upon us. I don’t have any answers and I wish I did. I wish my faith was enough to relax my soul, but it’s not. I wish, no, dream, for a blast of positive into the lives of children who have lived primarily in the negative.

I want to believe in a God that can turn all this around – I really do.

One

I may be way out in left field with this post, but it sometimes seems to me that some parents of children with disabilities seem jealous that their child is not ‘as disabled’ as their friend’s child.

There grows in communities groups of parents who have children with disabilities. These groups may grow out of shared hospital experiences or shared school experiences or maybe just through word of mouth from one family to another. And the adults in the groups come together for support and to share their stories that usually only others in similar situations will understand. More often than not, the children represented by these groups have very similar disabilities – parents of children with deafblindness, parents of children with Down Syndrome, or parents of children with trachs, for example. But what if you are the parent of a child that just doesn’t quite fit the same description of other children in one of the groups? What do you do and where do you find your support?

What I have seen several times is that the parent might slightly exaggerate their child’s disability. Or, the parent will accumulate the trappings (high tech wheelchairs, special vans, etc) that might admit them to their group of choice. They will pattern their daily experiences (“Mary was up four times last night, and I am so exhausted today”), after the others in the group to which they wish to belong. They will adjust their lives to place more focus on their child and that child’s disability if doing so will admit them to the group.

Here’s an example without using real names, of course:

Sue is a young 30-something parent of a little girl with CP. On one of her visits to the hospital, she met another parent, a parent of a child whose survival depends on a trach, tube feeding, and constant suctioning. That other parent talked about her friends, other parents who shared a similar life and who got together regularly for birthday parties, lunches, and other such outings. Sue, feeling a little isolated in her life, exaggerated the level of her daughter’s issues just a bit to wrangle an invitation to the next group meeting. And from there, the exaggerations continued, but she was admitted to the group.

It saddens me that parents might feel a need to do this. It saddens me that we parents of children with disabilities isolate ourselves with others in similar situations just to find the support we need. We talk about inclusion all the time, and all the while, we often unknowingly are excluding.

I know it’s difficult for true inclusion to work, and I know that there are many, many facets to inclusion. I know I may never see it fully bloom in my lifetime, but that doesn’t stop me from dreaming about it. I suggest we try to envision the inclusive world we all desire while at the same time finding the support we need. I fully realize that it is much easier to bond with another parent whose child is on a trach if my child is on a trach. But let’s try setting aside the specifics of disability and concentrate on the specifics of humanity – regardless of ability.

We may not be able to change the world as one, but if each of us makes small inroads, I have to believe that one day the world will change and be universally accepting.

Dreams Evolved

There was a marathon on TV this weekend of the show “Say Yes To The Dress”. The show featured brides shopping in one of New York’s priciest bridal salons in hopes of finding their perfect wedding dress. I watched a few episode before overdosing on words like mermaid, ballgown, bling, and “it’s just not me.” But, during the shows I did see, every single bride, during their short recorded monologue, said “This is how I always dreamed my life would be.”

Admittedly, most of the brides were quite young and their lives up to the point of being recorded for the show probably were living their dreams. Many, maybe even most, young girls have similar dreams – meeting a soul mate, getting married in a beautiful ceremony in front of family and friends, and then continuing the dream with a perfect marriage, a perfect house, 2.5 perfect children, etc. etc.

And I was one of those young girls. I had my life mapped out by the time I was 16 years old. My marriage would be wonderful and special. I would stay married like my parents for scores of years. My children would be smart, well-liked, and well-behaved. I would have the house with the white picket fence and a dog and a cat in the yard.

SMACK!!!!!

That was life giving me a wake up call soon after getting married. My ex-husband turned out to not be the man of my dreams. He was an abusive alcoholic. We didn’t have the house with the flowers in the yard. We had a bankruptcy filing. I didn’t have friends because I felt I needed to hide the horrors of my life. And, it would take 14 years before I realized my dream of having a child.

That, I now know, was my life-in-training. My dream has been realized although it is pretty different than the dream of my 16 year old self.

I now do have the house of my dreams, a house that is very-well suited to the children I have. I have five children, the gaggle that I did always dream of. I have a good job, though it does wear me out most weeks. My children and I have friends and neighbors we adore, and even though disability is a constant in our lives, we are happy and content.

So, my life has evolved into a different dream, but one that has made me happier than I ever thought possible. How about you? Did you have dreams that came true, dreams that evolved, or dreams still waiting to burst forth?

Baby Steps

I learned long ago not to spend New Year’s Eve making a lot of resolutions. Even given a boatload of good intention, I would usually not follow through on my resolutions, and would then feel bad. But this year, I am quietly and gently trying to make a few changes in my life.

I’m trying to slow down a bit. With five children and a full-time job, life can seem to careen about at breakneck speed. And still, I wouldn’t feel like I was getting enough done or doing a good enough job at some things. So I’m trying to cut myself a break.

I’m lingering over meals just a few minutes longer. I’m not rushing to get off the phone when a friend calls and needs to talk. I’m spending about 5 minutes longer massaging Ashley’s arms and hands with lotion after her bath. I’m having a cup of tea and spreading a blanket over my legs on cold winter nights. And I’m not panicking if I don’t get my kitchen floor scrubbed each and every weekend.

Another thing I am trying to do is to separate myself a bit from people who present a negative presence in my life. I tell my co-worker who always imagines the end-of-the-world as we know it is fast approaching that I am busy and need to get back to work. I’m reading fewer blogs if the blogger has a tendency to focus on the negative. I’m trying to spend less time around people who ‘drain’ my energy, people whose life is an ALL-CAPS life EVERY MINUTE OF THE DAY.

I’m trying to smile more, rest more, enjoy the extra small things of life more.

So far, it’s working….

An Always Holiday Spirit

A lot of people seem nicer during the Christmas season. Not everyone, of course. There are still those folks who are impatient standing in long lines or angry because you took the parking space they believed was reserved for them. But I have noticed more smiles, more "Have a great holiday!", and more considerate comments to the salespeople and service workers.

I'm glad to see it during Christmas, but I really wish I saw it more all year long.

I know that we all get impatient, get angry, and just have bad days. But it's more of the blah days I wish we could overcome. I know it's early for New Year's resolutions, but I want to thank more people in the future. I want to smile at strangers more often. I want to slow down and enjoy the life that surrounds me not just the life I have programmed for myself and my family.

I want more people to say, "What a nice person" instead of "What a b*tch." I want my children to learn to be more thankful and less expecting. I want my whole family to notice sunsets more often and comment on lovely flowers more often. I want my children to rush to help someone, not rush to criticize or complain.

I just want to bottle this Christmas spirit and let it out in dribs and drabs all year long. And if someone runs out of the Christmas spirit, say around March or April, I want them to be able to go to the Christmas Spirit store and get some more - free of charge, of course!

Tonight, this Friday of no particular importance, I will pray for more peace, more respect and consideration, more happiness, and more joy. Will you join me?

I Can't Sing

I can’t sing. I know that because my third grade teacher assigned me a solo for the chorus recital, and then rescinded her offer after hearing me. I also know because my 8th grade chorus teacher gave me an ‘F’ on my report card. Throughout my entire elementary, middle and high school career, I had straight A’s except for that one F. Obviously, I could not sing.

I’ve heard the can’t word a lot of other times in my life. And I’ve heard the not-good-enough phrase more times than I feel I should have. I’m not sure why I kept hearing those things. Surely all the folks in my life sphere couldn’t be conspiring to knock down my self esteem, but it was indeed knocked down. My response to all those people was to prove them wrong (remember those straight A’s?).

I’ve spent my life proving naysayers wrong because I feel like I have to. I was told, “You can’t be a police officer.” Oh yea, watch me. “You can’t be a parent because you are not a good enough wife.” Oh yea, watch me. “You can’t do that job, or complete that, or succeed at …..” Oh yea, watch me.

Yes, I did and continue to prove the naysayers wrong, but it’s exhausting and takes a high toll on one’s self esteem in the process. I don’t want my children to travel that same path.

I refuse to let people talk about what my children can’t do – whether those people are doctors, teachers, family or friends. I refuse to let anyone say that my children are not good enough, and if anyone doubts that, I dare them to say it to me.

I want my children to grow up knowing they are unique and capable and loved, not for what they can or can’t physically do, but just for the people they are.

So, if I could only give one gift to my children this Christmas it would be the knowledge that they are now and always will be good enough and that they can do anything they want to do, regardless of what anyone says. My goal is to surround my children with people who believe as I do.

So, if you have been asked to leave our circle of friends – if I have asked for a new professional to take your place – if you feel us withdrawing from you – now you know the reason why.

Oh, and my children have never complained about my singing – especially the deaf ones :)

Just Wondering

We parents of children with disabilities spend a great deal of time advocating for our children. And, that advocacy often involves some sort of inclusion for our children with their non-disabled peers. We will say that we long for the vision of all children, regardless of ability level, playing together, learning together, just generally being one big happy group. But what about within the world of disabilities – do we advocate for that same level of inclusion? I’m not so sure…

I’ve noticed over the 13 or so years that I have had children receiving special education services in my school district that even within the disability world we tend to segregate.

Children with milder disabilities, even some with invisible disabilities, do not socialize or learn with children who have severe disabilities. Parents of children with Down Syndrome, for example, usually win the battle to have their children educated in the general education classroom. The children move freely among their non-disabled peers. But my children with significant or severe disabilities are kept in separate classrooms, often in separate areas of the school, using separate lunch tables, and with limited or no access to their non-disabled peers. That seems to be ok with those parents of the Down Syndrome children. But it usually is not ok with the parents of the children with severe disabilities.

And then there are those times and events that include children with emotional or behavioral issues. Parents of children with disabilities that don’t have those issues can often be seen drawing their children closer, away from the ‘wilder’ children. Or, parents of children with Deafness will often only facilitate socialization only with other Deaf children, relying on the whole Deaf Community argument for their rationale.

More and more, I hear about ‘Autism’ classrooms. Are we sure that isolating children with Autism will make their adults lives easier and happier? Are we afraid to have children who are blind, or have ADHD, or who have orthopedic issues interact with the child with Autism? I know that I have heard many, many times that “I don’t want my child around that child with Autism. He will learn even more negative behaviors.”

Umm….So is inclusion only good when it suits us – when we think our children with disabilities will learn positive things from others? Are we being a tad hypocritical?

What do you think?

What is Your Virtue of Choice?

Are there certain qualities you hope your children will have as they grow up? As parents of special needs children, I think we all hope our children will become good self-advocates. But what else? What other virtues do you hope to instill in your children as you raise them?

(pictured right is the statue titled "Personification of Virtue" (Greek ἀρετή) in Celsus Library in Ephesos, Turkey)

I did a little research on the topic of virtues.

First, I wanted a good definition of the word virtue. Here is what I found:

Virtue (Latin virtus; Greek ἀρετή) is moral excellence. A virtue is a character trait or quality valued as being always good in and of itself. Personal virtues are characteristics valued as promoting individual and collective well being.

I like that one, especially the part about promoting individual and collective well being.

I was already familiar with the Catholic definition of virtue given my upbringing in the church. The church defines seven virtues, and the one that is most important to me is humility. The Catholic Catechism defines humility as “Modest behavior, selflessness, and the giving of respect. The courage of the heart necessary to undertake tasks which are difficult, tedious or unglamorous, and to graciously accept the sacrifices involved. Reverence for those who have wisdom and those who selflessly teach in love. Giving credit where credit is due; not unfairly glorifying one's own self. Being faithful to promises, no matter how big or small they may be. Refraining from despair and the ability to confront fear and uncertainty, or intimidation. “

That definitely summed up what I hope to instill in my children.

A little more research led me to Benjamin Franklin and his list of 13 virtues. His original list only included 12 virtues, but he was led to add a 13th – humility:

"My list of virtues contain'd at first but twelve; but a Quaker friend having kindly informed me that I was generally thought proud; that my pride show'd itself frequently in conversation; that I was not content with being in the right when discussing any point, but was overbearing, and rather insolent, of which he convinc'd me by mentioning several instances; I determined endeavouring to cure myself, if I could, of this vice or folly among the rest, and I added Humility to my list."

Then I found one more definition that I liked the most:

Being humble is considering others as important as yourself. You are thoughtful of their needs and willing to be of service. You don’t expect others or yourself to be perfect. You learn from your mistakes. When you do great things, humility reminds you to be thankful instead of boastful.

Yes, I feel I will have done a good job as a parent if humility is a virtue my children learn to practice and cherish. And while this statement may not reflect humility on my part, I believe I am well on my way at instilling that virtue in my children’s lives.

I am proud of what they have become and look forward to what they will still accomplish.

What about you? What virtues are important to you, especially for instilling in your children?