TupperWare's Chain Of Confidence Contest

I entered this contest using my mother as my muse and inspiration. I guess I am now not the only one in the family dealing with a handicapped loved one.

She is currently dealing with a huge change in her lifestyle due to my Dad having severe brain trauma. To view what I wrote go to their site. Here is the link:

http://www.chainofconfidence.com/index.php?page=essay-display&essayid=45

Don't just stop at my story. Be inspired and read all the things women wrote about the people in their lives who inspired them to go the extra mile.

Better yet look up the rules and enter yourself. What have you got to lose! It's only 1500 characters and they have some great prizes.

http://www.chainofconfidence.com/

The Smell of Purple

He was in his room too long. I was getting cocky about dealing with his behavior and somehow this must be God’s way of reminding me: nothing is predictable with this young man.

My son had, what a lot of parents will recognize, as a melt down. He had screamed and threw things around the room because... well I can’t even remember why. It doesn’t matter. It usually happened because his ordered routine was jumbled around.

What I had instituted was technically not a time-out but a “well why not go to your room to have time by yourself to just calm down.” It appealed to him because usually the other reason he would have a meltdown was because he was feeling overwhelmed. We didn’t use it as punishment and he still had his toys in there. More like a time of reflection, quiet and calming. It was actually quite effective.

But this time he had been in there too long. Usually he came out smiling in about 15 minutes and this was 30.

I walked down the hall feeling like I had a block of cement in my stomach. What could he have done in his room in that amount of time. Well he could’ve done lots. The worst thing? He could’ve opened his window, pushed his chair over and climbed out the window because something caught his eye. I started to feel panic well up from the block to my chest.

I opened the door and was surprised to see him all tucked into bed with the covers up to his neck. He was certainly calm but he seemed pleased with himself and this did not bode well.

“Hi honey.” I said quietly in that high pitched kindergarten teacher voice I used. He seemed to react well to that.

“Hi mommy.” He said quietly and calmly with a beatific smile on his face. The covers were still tucked under his chin and it was then I noticed all his clothes neatly piled on the floor beside his bed.

I slowly walked to the bed and continued, “Well sweetie what have you been doing all this time?”

“Nothing really. I colored a bit.” He calmly replied.

I was still nervous because he still had the covers tucked under his chin as if it was the most normal thing to do in the middle of the day.

I slowly moved forward, “Hmm why not get up and show me what you colored.” My hands reached for the covers and slowly pulled them off.

There under the quilt his small naked body was covered with purple marker. I felt my jaw drop open and I stuttered in search of something rational to say.

“ Don’t I smell good?” he asked. My eyes wandered from his neck, to his belly, his private parts and finally landed on his toes. He was literally colored from neck to toe and more so in some parts than others.

I was completely disarmed by his candor and the innocence of his question. “Uhhmm yes you do.” I noted the sheets were colored as well.

I scrubbed him for an hour until he complained of a burning sensation. It might’ve gone unnoticed by the general public except they started school swimming lessons that week. That was actually a blessing since it meant more exposure to cleansing water.

The sheets? Well I eventually cut them into rags as the sheets aged but whenever I have to pull out a rag and it has purple marker on it....well a smile just creeps over my face as I remember.

What I Told my Children

It was a no brainer that I would have this discussion with my own children. My youngest has a developmental disability and by age 5 it was becoming apparent to both my older children that he was not keeping up with them.

I was so sad but my kids were incredibly upbeat. I told them in simple terms that their brother was probably not going to be as smart as them in school. My daughter immediately piped in that her younger brother was very smart about some things just not “book” things. I was at a loss at what else to say so, I asked them what they wanted to know about their brother. I could’ve given a long and involved discussion about their brother’s disability but would it have been meaningful to them?

Did they ask how long he would live, would he get married or have children? No they wanted to know if he would be able to play with his friends and go to school as long as he needed to. I easily answered these questions with a yes.

Did they want to know if he would go to university? No they wanted to know how he would manage at school. I told him his teacher had him in a special class with lots of help. I told them he was getting an aide, who would be with him all the time.

They asked if other kids would tease him. I replied honestly that probably there would be times he would be teased and people might not be nice to him. I told them we might have to help him out so that people didn’t take advantage of him. I told them that I still loved him no matter what and I would always make sure he was okay.

Both my children said they hoped I would do that for them as well. Yes, I replied and added that all this meant was, that they were my children and it was my job to protect them, teach them and take care of them no matter what. I would be there always whenever they needed me. It was just that when they got older they might not need me as much as their brother would.

I guess what I did learn was that instead of giving them all sorts of information that they might not need or understand, I asked them what they wanted to know. I told them that if they ever had any other questions about their brother all they had to do was ask.

What I noticed was that they often would ask their brother what his experience was like. For example if we went somewhere my older children would discreetly ask their little brother if he understood what was going on or what was being said. By letting them lead the discussion about their brother’s disability I opened the door to them taking charge of finding out what their brother needed and understood.

I also noticed that as they grew to be young adults they were far more understanding of others disabilities. Being considerate and understanding came so naturally to them it was a beautiful to see them act in a caring manner with others who had disabilities.

When my little guy started school I told the teachers to approach their students with the same spirit of understanding. That the other children didn’t need to or want to know all the details of what was different about my son. They just wanted to know if he would play with them.

Please take the time to check out this organization, who’s philosophy is all about treating children with a disability in an inclusive manner: All Kids Can

http://www.cvscaremarkallkidscan.com/about_all_kids_can.php

The Dying Art of the Housewife

My life is a long list of “things I want to be when I grow up”.  I wanted to originally be a Marine Biologist because I wanted to live on Vancouver Island. How bizarre is that considering where I live now!

But no matter how many paths I wandered down I always came back to “the family”.  In every endeavor I took part in, my family was always there in the back of my mind. Would this take too much time from my family? Would there be money diverted to this that would mean less for my family? Would I prefer to spend time with the people in my family or other people I had met along my path to the perfect career? 

It always boiled down to one thing. I was never prepared to put in the long hours it would take to start a new career or business. I spent lots of time planning how to work things out and then I would screech to a halt because it would mean endless hours away from my family. 

Even teaching created a conflict. I thought to myself, “Here is a job that gives me the time off my children have.” But there were committees to participate in, there was ALWAYS work to correct and planning required to teach the classes. What made it even harder was I never got the same grades and subjects from year to year. Every year I would have to start over with new plans. 

There was personal coaching. I even passed my Certification exam, which was very nerve-wracking. It was a series of written exams on all 120 hours of course content I received and an final oral exam. Yikes! But the examiner said I was very good at what I did. Then I found out that it wasn’t going to be as easy as sitting at home and talking to clients. I would have to go out to network meetings and groups and constantly be on the lookout for new clients. I tried creating alliances with other organizations but it always meant taking THEIR courses and paying out more money. So that bumped up against two of my issues: time and money.

I did several workshops for the local Women’s Centers but they didn’t want to pay...

Last Christmas Dale was away for 10 days and I had a lot of time to think about what was most important to me. The bottom line? My family was most important to me. It was important for my family to be able to come home to a clean and relaxed environment. Everyone had stress in their life. They needed this oasis in the storm of life. 

It was important to me that money be taken care of and planned on. I enjoy taking care of the money that comes into our household. Its key issue to removing stress. 

It was important for me to plan healthy food and activities. I mean what was the point of a nice, clean quiet house and everyone is too sick to appreciate it. 

It was important to me that Dale be taught how to become and independent adult and who knows him better than me. He can see all the job coaches and support workers he needs but it always comes down to how I can support him myself.

When I decided to write about the art of housekeeping I went back to our bookshelves and found a book that was probably the most instrumental piece of writing I had come across. It was an inspiration. Here was a woman who felt the same way as I did about being a housewife and how important it was to take care of myself as well. I was no good to anyone if I was angry, tired or sick. It is called “Simple Abundance: a Daybook of Comfort and Joy”. Every page represented a day of the year. Each day had a topic written about housekeeping or self-care. 

When I finally tracked down the book it seemed a lot thicker than I remembered. As I leafed through the pages I found sentences underlined and comments written. I found little reminders tucked in pages of things to do with my life: a plane ticket to meet Norm, a note from Norm and some from my children, a ticket to Keith’s Gr 12 graduation, a paper with a list of academic presentations for Lyndi’s Gr 9 graduation, photo’s and wishlist’s. I took an hour to go through each memento and realized that this book was a huge influence on what I became most passionate about - and that was my family.

Each section, each day was devoted to a particular aspect of the art of being a housewife. I found I bought a copy of a Companion book to go with it. I remember reading each daily devotion and then spending 45 minutes journalling. 

Is this a career calling for any woman? I doubt it but this is MY career path. I think it’s time for me to start reading each daily page over again and reaffirm what I truly am passionate about. Maybe I will find more memento's to stick between the pages.

Rudest Comment

This little blog is in response to a contest about coming up with the rudest comment someone ever made to you regarding your parenting.  Twitters Moms and Care.com are teaming up for this one. See their links in the side bar.

As a parent of a handicapped child who doesn't LOOK handicapped I've fielded quite a few of those. But there are some parenting skills that the roaming public feel compelled to comment on.

 

For example one such skill that spanned the raising of all three children had to do with my breast feeding techniques. I was always amazed at what people felt compelled to share. I was sitting in a shopping mall and my son was crying. He was hungry. He knew it, I knew it and my breasts knew it (breast feeding moms will know what I mean). I sat down with him, covered myself up and discreetly and we all instantly experienced a Zen moment of peace, quiet and contentment. 

Five minutes into the event and older woman (well at least much older than me) came up to me. She was hunched over, trying to get a better look and obviously going to make a comment to me that she felt was called for.

"You aren't breast feeding your child in public?!" she gasped.

Honestly when did this situation become a social gaff. For thousands of years women have been breast feeding their children in all sorts of social situations. However, in the last 100 years or so, it has become "disgusting" and inappropriate to breast feed in public. I refused to sit in a bathroom to feed my child. He had the right to eat anywhere just like any other human being.

I remained calm, looked her straight in the eye and answered, "No. I'm baking a cake." After which I ignored her and let my son ease his hunger and drift off to sleep.  She tisked her way down the mall and I had a little chuckle.

No Such Thing As Irresponsibility

I was coaching a client of mine when I came up against this comment. It was in connection to “fun” or “having fun” and “irresponsibility”. I’m not sure why it is, but as adults, we tend to link those two words together. As we grow up we believe that to have “fun” means being “irresponsible”. I think the adult population of the world is in dire need of a break from seriousness in the form of FUN.

I was curious to see what the difference in definition was so I looked it up and found that my dictionary stated that irresponsible was: lack of someone being in charge, having no authority, no accountability. Then I was intrigued to see what the definition of fun was. It was not listed in my dictionary. I started to giggle as I realized the significance of that.

In a world fraught with seriousness my own dictionary did not see fit to have the definition of fun. I was quite intrigued by now, so I asked my local speaking group, if they thought there was no such thing as irresponsibility and if fun was being given a bad name.

They all felt that irresponsibility was being unaccountable but that fun was not the replacement for it. Which is quite strange but amusing, when you realize I didn't really ask them what fun could replace . I persisted and asked how they would define fun. I was brushed off and they all replied, “Well you know… don’t ask such a silly (irresponsible) question.”

I believe as we become older we decide that to even have fun is irresponsible. Someone has to be in charge, someone has to have authority and most definitely someone has to be accountable. Do we take turns at this? Is there a fight over who’s the boss? In our rush, as adults, to be responsible did we throw “fun” out the window with the proverbial bath water? I didn’t understand why the two could not co-exist in a world of adults.

I know that fun is important to me. I know that with a handicapped child I’m very lucky. I get to play whenever I want with my child-like son and no one is the wiser. Was I supposed to share this secret? Was I being irresponsible by not sharing this? Nope, I always had too much fun to worry about what others were thinking. I suppose that meant I was in charge but it never felt that way.

I know that a lot of times my friends knew exactly how to get me involved in what they were doing. There were plans to go somewhere or do something. There would be much cajoling and begging.

“Come on Maureen, it’ll be a lot of fun and if it isn’t fun right away, you will know how to make it that way.” Did this mean I was responsible for making things fun? Now wasn’t that a bizarre position to be in. Imagine me being responsible, in charge of and the authority on fun. Would I be completely irresponsible if I didn’t respond or become accountable for the fun that was happening? I was baffled why it was me in charge of the fun department.

I think that in our rush to become responsible wage earners, parents, family members and business people we lost track of what brought meaning to life. What was the point of all that work if there is no fun? How responsible and accountable was that?

All I know is: I’m tired of being responsible, in charge and accountable for the fun that happens with the other people in my life. I’m going to be completely responsible and be only in charge of the fun in MY life.

My Sons Greatest Handicap

Someone in our support group had mentioned that the greatest disability our children had was: they didn’t “look handicapped”. With some disabilities it is visible and with others once a child moves or behaves a certain way it becomes visible. In a lot of cases, with my child, it’s not always apparent that he has a disability until you talk to him or if you watch him for an extended period of time. The other person will get this “funny feeling” that something is just not right.
I either leave to avoid embarrassment or try to explain why they are experiencing this strange sensation. A lot of times there is no quick explanation. I suppose this happens with other disabilities but sometimes there is a handy quick label to supply for an explanation. That just isn’t so with this type of disability.
It actually doesn’t matter what the disability is. Because whether or not it is visible or there is an explanation I am brought back full circle to the idea of who really is the disabled person here.
My child is usually not aware that he is receiving this type of reaction and quite often he doesn’t really care. So who is the disabled person? Why, me, of course! I am the one who feels compelled to explain why my child is acting the way he is. I am the one who feel compelled to leave because either I have to give the long version of his disability or give the short one and most definitely risk misunderstanding. That’s a whole other story.
In the first case I am disabled by my ability to succinctly explain what is different. I am disabled by the fact I feel compelled to explain my child’s behavior. My mind races for a simple way. I try to gauge how understanding this person is and how much I can tell them so they understand but don’t jump to conclusions.
If I run away I am disabled by my compulsion to hide my child, to protect him. I am afraid of their judgment and opinions, which really won’t make a hoot of difference to my child.
In truth, I am under no obligation to do either of these things but because I am disabled I feel driven to do this. But I have a lot of experience with both of these situations. I have a lot of experience with people who stare, glare at my inability to “control” my child so he meets their standards of how a child his age should act and talk. I have a lot of experience using different speeches to explain why he does what he does. Not many of them have been successful.
But that was awhile ago. I’m not cured of this disability but I’ve learned a new way to handle these situations and I learned from the best. I choose not to be too concerned by what my child is saying or doing. I choose to focus on the moment and deal with what I find inappropriate behavior, actions or verbal outbursts. If nothing too bad is happening I often will look at people’s reactions but quietly I say to myself, “It’s not me or my son who has the disability here. They do. And the sad thing is they don’t even know it.”