Special Manners 101- You may not see it, but its there.

~~ When you are someone with disabilities or are the caregiver of one, you  quickly learn a few simple facts. Not everyone understands simple common courtesies. So as we blog and I think of things I'll include them here. I would love to hear your thoughts and solutions as well. ~~

Special Manners #102

I wasn't going to get in the habit of repeating the Special Feature parts of my blog, one after another, but recent personal moments have shown the need for this one. Really the topic I'm about to cover is a no brainer in my world and one many folks (I thought) already knew. I could be wrong. *shrug*

If you have an ear ache and didn't show pain on your face, no one would know unless you said something. If your leg was cramping and you limped a little, no one could know how bad it hurt unless they have had that cramp themselves. They may have heard of it but that's not the same as feeling it.

So here's the thing... They can't tell you not to take pain pills for the ear ache, because they really can't feel how bad it hurts. They shouldn't tell you to just walk it off if they aren't aware of your injury. 

Apply the same kind of logical thinking to disabilities and illnesses that are there but not in your face visible.  You may be able to see a few mannerisms, a slight tell-tale sign like in a walk or the way someone speaks, or they may look like they have nothing going on behind their eyes but over all you really can't judge the book by the cover.

Just because you see the child walking today doesn't mean that they are faking it when you see them in a wheelchair next week. Just because the Autistic child seems to be beyond our reach, doesn't mean they don't hear and process the cruel words your child says as they point and laugh. You can't see the lack of sleep a parent has when their child has a seizure that makes them so weak that they have trouble breathing. You don't know how hard it is for a mom to smile when depression is dragging them into the darkness.

The Manner: Your place is not to judge another by what you think you see or know, but to accept them for who and how they are. They don't have to fit into your ideal vision, only fit into their world as best as they can. Enjoy them for who they are. 

Watch Carly and see what can be hidden behind the cover of a book. She spent years locked behind Autism's walls but when she came through there was a person no one, even those close to her, could imagine. After you watch it, think about what you would have thought if you had been a friend of the family, if you saw her in a store, and if you had been her parent. Think about how you would have treated them, or how you would have reacted to that treatment.

 

My son was recently given an order for a wheelchair. It's main purpose is to get him around more trying situations. We will use if when we shop, when we will be gone from home for long periods that may tire him to easily, when he has a seizure that leaves him with Jello limbs. I will use it after the procedures that leave him unable to manage things.

Because he has days that are golden, where he can run and play just a little behind the others, not everyone sees the need for such things. They don't see him at his worst. They think he is babied or lazy or some other such nonsense. And it hurts more then just his parents to hear their judgements. His siblings and even himself, are affected by that ignorance.

I know of a woman who makes those around her smile with her humor and music. She has struggled forever with depression and it's toll on her life and family. It's hard to give your all to your family when the world seems like a place you would rather not be in. She is belittled for her struggle yet has overcome so much to raise her family up into almost adults. She's a beautiful person with a quick wit and a loyalty that knows no bounds. If only people would take the time to see past her darkness, they would know such wonderful gifts.

Here's what you do... remember to that time when that person pointed those hate filled fingers at you. Were you fat, ugly, too slow in gym class, or have glasses? Remember how you felt. Remember the hurt and the helplessness you felt? Now think of the folks we've talked about here. How will you treat them next time you see them in the store, when you pass them in the hall, when your child wants to play with theirs?

Know that there is so much more to a person who has a disability then the disability. They are people who smile, laugh, cry, and feel alone. And remember that while you may not see their pain or condition, it doesn't mean it isn't there or isn't real.... you have no idea what they deal with when you aren't there staring.

I close today's lecture by saying I'm sorry that it turned into a lecture. This one was born of my own pain and I know that. But if I am silent then no one will know to stop and think before passing up on some really good people based on intolerance, misconceptions and pure ignorance. 

I will try to add smiles to the next time we meet... was the tea good? Today's was mint. Be well and find reasons to smile often.

Special Manners 101 - Siblings Are Special Too

~~ When you are someone with disabilities or are the caregiver of one, you  quickly learn a few simple facts. Not everyone understands simple common courtesies. So as we blog and I think of things I'll include them here. I would love to hear your thoughts and solutions as well. ~~

Special Manners #101

When people encounter a family of mixed abilities, health issues, or behavioral problems, they often either zero in on just the special needs person or the parents. Left behind are the "typical" children. Here's the real rub, those normal kids carry extra burdens because they aren't impaired.

The special needs child may require tons of extra attention from the parents. It doesn't matter to the sibling that the attention isn't all about playing and cuddles. What matters is that they aren't given equal time. As a parent I can tell you that there is no way to balance it all. Less so with each major disability in the home.

There are therapies that often have the disabled child getting a sucker, small toy, sticker or stamp. What does the sibling get? They get to do their homework in the waiting room for an hour while missing their favorite cartoon or time with their friends.

People donate things from time to time and it goes to those with needs. Guess what? Every child has needs, even those with typical abilities. There is no ribbon for them that mom proudly wears to bring them to the mind of others. They don't have a day or a month of recognition that celebrates how much extra work they put in helping their sibling. 

Siblings that grow to feel left out, put out, or uncared for will find ways to show you. Their actions will then cause harm to everyone around them. School grades may drop because they think no one cares. After all mom is too busy learning about IEPs. They may become violent just because they can't voice their frustrations. They may not even realize why they are upset. 

So what do you do?

The Manner: Remember that every child is special and unique, even the normal ones. 

There are little ways to give to the siblings that don't take any extra effort or money. It's what most parents try to do anyway. You can catch the child being good or going the extra mile and tell them what a great job they are doing. Let them know that their help is wonderful and they will carry that with them. Involve them as much as they want to be in their siblings home based therapy, and the cause you are behind. But if they don't want to be involved, don't force them.

If the sibling is younger, then a boring therapy appointment can be made better with a story that they pick, a bit of time at a park that's close by, or some other small "me" time. If you are a friend or family member outside the home you can offer to watch the sibling for therapy time and do that quietly fun thing that makes them smile.

A simple word, small gift, a little bit of attention goes a long way. And as you know I like to say: Balance is key! just like in a typically functioning home.  Don't over shower the sibling with fluff that amounts to buying them to be good. They will catch you and it will become it's own monster.

How do you balance the family? ... Oh and don't forget the spouses.... they can suffer as much as the children do.

What's Real Love?

"Know love in all it's forms 

and know nothing less then contentment"

I was talking with a friend recently and we got talking about Love. I got thinking about it and now you are stuck with reading about it. I know, I know... you can check out any time you want.... but can you really ever leave?

When most people hear the word Love, they think of the love between a man and a woman. But really, at some point, I think we all reach for a more basic Love. The love that is shared in every type of relationship. Love forms between family members, friends, and even couples that is truer and deeper then the general obligatory type that the label suggests.

Real love is full of simple shared moments. It doesn't have that desperate clingy feel that often comes with the loves that spark hard and fast then burn out. It tends to be steady and reliable even with the bumps that life brings. You know about what to expect and so does the other person. No, it isn't a boring love. There are surprises but not usually the kind that derail the relationship.

Real love tries to understand, shares, guides, but doesn't expect you to always follow. It allows you to be you and loves you all the more for it. Love wants better and more for you but knows that you will do what you need and want to at your own pace. It accepts that. It's even ok with it. And just as importantly, it doesn't judge, hold it against you, or say "I told you so."

Real love isn't easy or really hard. It just is. It rides the tide of life.... some times requiring extra from you while other times giving you an extra bit. You have to give in order to receive but you should give because you love, because it is the right thing to do not to gain. I'm just sayin' 

Real love laughs, smiles, cries, and aches right along with you. It tells you that you can over come, that you've done well, and that it's all good. It forgives. It asks forgiveness. It isn't perfect, may not last forever, but it is a treasure that you will always hold in your heart. 

Accept love, give love... in all it forms. The love from a friend can ease pain and bring smiles. The love from a child can chase away the darkest clouds. The love from a mate can ground you when the world turns upside down. Things happen, life changes, and so does love. It's sad but worth the risk. You will find real love gives you the chance to be the best you that you can be and reaching for more then you knew you could.


Know Love, Peace, and Contentment.

Parenting Thoughts

Parenting For the Greatest Good

It often amazes me on how hard people work on things that are of little consequence but then put little effort into family, marriages, and simple raising of children. The article above is one I wrote using the positive approach to parenting. I have found that simple loving respect works wonders.

What's your approach?

Are On-line friendships Less?

The world is different these days. We can know people who live on our block and half way around the world with the same degree of intimacy. There may be lack in physical touch or such, but really even that has been worked around. 


So how should we look at the people we call friends but just know in the box? Are they some how not worth as much just because we haven't flown out to meet them or didn't go to high school with them? If they are sad, hurt, confused are we supposed to click our tongue, say "that's too bad," and move on to the next friend? Or should we say, "what can I do?" 


The reality is that we sometimes share as much if not more of ourselves with our on-line friends. Time isn't an issue because we leave this message and they get back with us when they can and then we get back to them when we can... we can give more because we can do it around the day to day life. 


We notice things about our friends on line, like changes in their type of "speech" as they write, the content they share, and how well it is all put together. We may miss this in a friend we just meet up with for lunch once a month. 


What is our obligation to the on-line friend? Do we owe them the same concern, love, and understanding that we would a friend who lives in the same town? Do we wonder about them when we don't hear from them? 


Time and energy put into any friendship gives it a level of importance. There are folks in your everyday world who could fade away unnoticed and others who you would cry a river for. But what of your on-line friends? We hold some as close as family so why would we not give them the same level of concern and importance as such?


Let's go back to a time when phone calls were scarce, there was space in the west, and people had to write letters to family and friends. Did the people then care less about each other because of the distance? They couldn't offer as much support or know as many details as the family that can now send and receive in a days time what would have taken months then.


On-line friendships and made family ties are as important as the friendships you had in high school. You invest you heart, your time, and sometimes your money in the people you find important connections with. They are no less your friend then the lady you meet for lunch. You also have oblications to them just as you would any other friend.


If you see a friend in need, in danger, or struggling then you offer what help you can. You take them a bag of groceries, you ask if they need to talk, or make some other move to help them. Really, if you are a good friend then it doesn't matter if you know these people just in the box but that they are your friend in the truest sense of the world. And true friends reach out, are there for each other, and look out for each other.


What is of real concern, is how easy some people can shut off that love and friendship. With a click of a button you can take someone out of your world forever. At least in the physical world you have to put a little more effort into it. Some things that can be worked through aren't for the simple reason it requires more work then hitting a delete button.


The world is changing. How people interact is changing. The need for friendship and love is not. Hold tight and honor your friends no matter where you met them. Treat them how you want your friends to treat you. Show concern, laugh, enjoy your friends because it is so much better then being alone.


Be thankful for the people in your world.