Sunday, May 29, 2011

The Misunderstood Child. Poem by Kathy Winters

The Misunderstood Child. Poem by Kathy Winters

Discovered by my friend  Jan Larkin on Sunday, May 29, 2011 at 9:52am

I am the child that looks healthy and fine.
I was born with ten fingers and toes.
But something is different, somewhere in my mind.
And what it is, nobody knows.
I am the child who struggles in school.
Though they say I'm perfectly smart.
They tell me I'm lazy - can learn if I try -
But I don't seem to know where to start.
I am the child that won't wear the clothes
Which hurt me or bother my feet.
I dread sudden noises, can't handle most smells,
And tastes - there are few foods I'll eat.

I am the child that can't catch the ball
And runs with an awkward gait.
I am the one chosen last on the team
And cringe as I stand there and wait.
I am the child with whom no one will play -
The one that gets bullied and teased.
I try to fit in and I want to be liked,
But nothing I do seems to please.
I am the child that tantrums and freaks
Over things that seem petty and trite.
You'll never know how I panic inside,
When I'm lost in my anger and fright.
I am the child that fidgets and squirms
Though I'm told to sit still and be good
Do you think that I choose to be out of control?
Do you think that I would if I could?
I am the child with the broken heart
Though I act like I really don't care.
Perhaps there is a reason God made me this way -
Some message he sent me to share.
For I am the child that needs to be loved
and accepted and valued too.
I am the child that is misunderstood,
I am different - but look just like you.

Thursday, May 19, 2011

Special Manners 101 - "You're In It For The Money"

"The easiest way for your children to learn about money is for you not to have any."
- Katharine Whitehorn
 Special Manners #103

Rowan was going to die almost from the moment we first saw him on the ultra sound screen at 14 weeks. He was never going to take that first breath. In July, he will turn 4. I admit that his birthdays strike a deeper cord with me then that of my other children. He has battled so hard to make a mark on a world that often just sees him as a number on a form. But those who love him know how far he pushes himself. 

He is one of three children that are still at home. His older sister is Autistic but is one of the luckier ones. She has grown and is a sweet, loving child who can speak, has a better control on her tantrums, and is open to learning the things she needs to function in a world that doesn't understand her. The oldest at home is an eleven year old who loves to read, is way too smart for her britches, and has the oddest cross to carry: she's the closest to normal in the home. Ask her, she'll tell you.

Rowan needs a wheel chair, braces that go from his toes to mid-calf, and other therapy items to help his legs and body do what it should. He has multiple diagnoses but no syndrome that carries a ribbon or a cause. I can use the puzzle ribbon for his Autism. A grey ribbon would be for his multiple allergies requiring a careful diet and also his asthma. The purple one is good for the ADHD, the seizures and even his daddy's crohns. Silver would show this is a child with disabilities and also person with a brain disorder. But I'm not sure what color covers apraxia, hearing loss, genetic disorder, chronic encephalopathy.... yeah, there's more but I can see you nodding off.

Here's the thing, he is a fighter. He pushes himself beyond the breaking point. He gets mad at himself when he can't do what he knows he should be able to do. He has shown the doctors to be wrong so many times and takes pride in it. This is a child who never should have taken his first breath.

He and the other kids have Medicaid. He has a special insurance called Children's Special Health Services. And I still have medical bills for him. Therapy is paid out of pocket. He needs speech but it costs $40 a week and should cost $80 but I took a day off of his time because I knew I couldn't make that payment. PT and OT both cost $165 each per visit. 

Around the holidays I asked for help meeting those needs. I shared it with some friends who sent it around their own circles. Not to long after I was told by a family friend that I was horrible for asking others to help when insurance would cover everything. *blink blink* Really? 

The Manner: Someone's resources are not as vast as the ocean and assuming that they are is rude. Insurance does not meet all of the needs of special needs children. There is no money in raising medically and developmentally fragile children. Often parents leave jobs to care for their kids. And if you aren't helping, it really is none of your business. And no, Obama's health care thing won't either and with all the politics surrounding it, who has the ability to wait for them to figure it all out? 

Why does Jerry Lewis hold a telethon? Why is there this foundation or that raising money for this disorder or that syndrome? Because there isn't any money in insurance to cover the pool that may help my son not spend hours crying in pain at night. Because there isn't any money to cover that at home program he needs to cover when we have to wait up to 15 months to start back at Physical Therapy. Because there isn't insurance money to buy communication devices to give him words. 

There are little things that aren't covered by insurance but cost money and are as important as medicine. Carnation Instant Breakfast adds calories to the diet of a child who won't eat. There are therapy tools that supplement the once a week visits that make those visits worth the money the spent on them. If you only do therapy once a week it is a waste because it all has to be learned again. 

Parents learn to cut corners and find supplemental items to keep things going but how does one supplement a wheel chair? In Michigan, medicaid is making pediatric patients wait 10 to 12 months to get their chairs, and by then they have nearly out grown them. Rowan's braces will not be the ones that the doctor wants for him because insurance won't cover them. That means they had to go to plan B and go with a less effective kind. 

People don't realize what goes into raising children with special needs. It isn't about babying them, or spoiling them, or them being lazy or anything else.... it is about helping them go as far as they can in the time that they have. If Rowan lives to his fourth birthday or his fiftieth or his hundredth, I want him to do all that he can with his time. 

And if luck is with the child, getting him as much help when he is young can make him higher functioning. And there is a lot of luck on his side, he can start working at some point and put back into the pot. This simple concept is lost on so many people who just right children off. 

I get hurt when I can't meet the needs of my children. I get ashamed when I have to find help. I get mad when I'm told by people who have no idea what it's like that insurance covers everything, that there are agencies to help, or that I'm just in it for the money.

On a side but related note: Social Security for these kids maxes out at $674 a month. And it isn't an amount that most people get. Just to cover that from the get go.

"Money is only a tool. It will take you wherever you wish, but it will not replace you as the driver."

Sunday, May 15, 2011

Helping those who help themselves.

"As you grow older, you will discover that you have two hands, one for helping yourself, the other for helping others."
Audrey Hepburn

Many of us are fighting demons, struggling against the tide, and surviving by throwing bones to the wolves that are chewing at our door. We know what it's like to have to say no to the latest new toy our kids want, the night out with our friends, and that vacation we had hoped to take. But some know what it's like to go hungry so their children don't. They struggle everyday to figure out how to make a paycheck cover even one bill and leave enough to have gas to get to work. They try to figure out how to get the medications that the medically fragile family members need when there is just no money for them.

People look at the working poor and see only what they want to. They may see someone with the internet and see it as an extra unnecessary expense but not see the few dollars that are made from it that the family uses to get milk that week. They may see that one parent doesn't have a job and feel that if the family really needed money then everyone would be working. It doesn't dawn on them that the mom may home-school, there may be only one car, that there is simply no one to deal with the needs of the family other then the stay at home parent, or that there may be medical reasons for not working.

"Ebenezer: But have they no refuge, no resource?
Spirit of Christmas Present: [quoting Scrooge] Are there no prisons? Are there no workhouses?"

Resources and programs set up to help, are running dry because of an economy that isn't as pretty as the press likes to paint. It may look good from the top but from the bottom it still looks like a pit of snake filled quick sand during a hurricane. There isn't as much out there to help these folks as it looks like or is talked about. The governments at both state and federal level have made cuts to their programs and that trickles down to the programs in neighborhoods because they get funding from that top level. The people who would have once donated to these types of programs have found themselves struggling so they no longer have the extra to give. The bottom line is that more people are trying to make do with and get help from less.

Not all poor are there because they are lazy, drug addicted, wastes of air that have babies just to stay on the welfare rolls. Many are just families trying to do the best they can. They started out fine and the car broke down, the job left town, or someone got sick. It's a lot harder to get back up then it is to fall down. Savings run out, bills pile up, and life just gets deeper and harder.

My Request: Help as simple as a click of a button and a few keystrokes for a family that is dear to me. If there is enough to spare, you could also help my family by clicking the donate button at the top of my blog.

Meet an everyday, working poor family: Dad drives an hour to work. He is driving the only working vehicle since the transmission went out on his car 3 months ago. There is a beautiful little girl who has a spunky way about her, that is very disappointed that she can't keep her kindergartener pictures because of cost. The boy of the house is special, unique, and a hand full that makes his mother smile often. The loving, hardworking, sweetheart of a Mom stays at home, takes care of children, and runs several blogs to help earn some get through cash all despite her medical issues that do not allow for outside the home work.

Often it is little things that knock them down. The car broke down and costs too much to fix. The internet bill had to be set aside so the money mom makes wasn't available so this other bill had to be set aside. It doesn't take a lot. Soon those wolves will be again attacking the family. They are days away from having their utilities shut off which will further add to their struggles in an avalanche of cause and effect that didn't come from their own doing. 

Meet another every day poor family: Mom works on-line making pennies from pay per view sites because it can be done around the 6 therapies and extra doctor appointments her family has every week. She has medical issues that go untreated due to lack of medical.

Dad worked steadily for over 27 years. 17 of those years was for one company. He got sick, had surgery, spent 12 weeks recovering, worked for 4 months and then was laid off. It was two years  before another job came along through the help of a local reporter, some kind folks, and the fact that he passed the physical and drug test. Just over 60 days into the new job, he was sent back to the hospital. In a 30 day period he spent 16 days there. He is not cleared to return to work and it doesn't look like he will be any time soon. And there is no medical.

There are three children in the home. They are all home-schooled because the local school district is in a state of devastation. One is a bright young lady of 11 years who enjoys reading, writing stories, and acting as therapist to her siblings. Both of the younger two have genetic changes that lead them to a diagnosis of Autism. The youngest has multiple medical issues, including some that can be life shortening or threatening. State and Federal medical have seen cuts and extreme requirements for services. It is a year wait for a medically necessary wheel chair.

These families are trying to make ends meet on their own. They have tried several avenues that life insists on roadblocking. They don't want a hand out but a hand up. Neither family drives a fancy car, has a big screen television, or pays to have their hair and nails done. Here is another writer's take on the story of these families. 

Here are some links to follow and ways to help: 

If you have a business or know of one that needs some add space there are at least two blogs that can help: Zilla Of the Resistance is a political blog that gets lots of regular views and is often linked to other popular blogs. Another, lesser known blog, Stone Soup is a family friendly blog written by several creative and wonderful women. You can place your order for adds here. 75% of that goes to the first family who is donating the other 25% to the second family. See? Even those in need know that we are all in this together.

If you click the Donate button at the top of this blog on the right and write in "Zilla" or this Donate  (family #1) button and write in "Chimes too" then the donation will be split between the two families. Or just click one of them to donate to just one family.

So you don't have a lot of extra to share but you are pretty smart and know a legitimate way to earn at least a part time income from home around a busy family? That is what these moms could use almost as much as cash. Please email any leads or opportunities you may know of to and both families will be given the information. Please remember that there isn't start up cash, not does either woman want to do a pyramid scam or the like.

Thank you for reading, for sharing it with others who may help, and for reading the blogs listed in my blog roll as well as this one. And please feel free to visit my other articles and stories. I thank you for all of your support. Don't forget to subscribe!

Jacob Marley: BUSINESS? Mankind was my business!
Their common welfare was my business! 
God bless us, every one! (Tiny Tim)

Monday, May 9, 2011

Review #1: Signing Families

Disclosure to keep the feds happy: If I review a product, service, or whatever, it is because I feel like it not because I get paid for it. I will happily try a product that I buy, win, or that is sent to me. I will review it based on how I really think, not on any incentive. I will send a link of the blog to original seller and allow them to voice their thoughts in the comments. You will see this disclosure at the bottom of all future "Review" blogs.

My friends and family helped my family win a contest put on at the blog of Louise Slattler. My sister, Amy, won through random selection using a third party site. It was very heart warming to read all the great things my friends and family had to say, and very beneficial to my family to win.

I received my prize pack in very good time. It contained bookmarks, ASL folders, "Sign Expressions Trilingual Language" charts, a mini emergency card, and a DVD. When I first opened the package I wasn't sure of what I would find because Internet based starter businesses are iffy on product production. There is great ideas but not always great results.

I love it all.
The bookmarks, folders, chart and emergency cards are all sturdy, well made, and has a surface you can write on with crayon or white board markers and then wipe off. They are even drool proof as far as Rowan has been able to test. The pictures are of actual children so the little ones can relate. The pictures show the signs and the labels are in both English and Spanish.

The DVD is titled Baby, Toddler, and Preschool Sign Language but it is a great jumping off point for the whole family. The running time is about 35 minutes. I was unable to run it on the laptop but that could have been the lap top's issue. It worked well on the home DVD player. It is well organized, easy to follow and has over 50 English signs. It also contains the numbers 1 - 10, ABC's and some signed Spanish as well. 

There are many uses for the products, not just for the hearing impaired but also for families like ours that is using it to supplement other communications. There is also another great use that I hadn't thought about until I was checking out the Signing Family products; emergency response and responders.

The times we live in has seen a rise in the need for emergency responders to understand and be able to deal with special needs of all kinds. I can see communities using the products from the site to educate and empower their emergency responders. The Red Cross, National Guard and FEMA may even benefit from them.

I put together some folders to give to a few of the everyday caregivers that work with my children. I put a set in my son's bag that goes everywhere with us because his medicines are in there. And we are using them in our home. 

You can modify the usage fairly simply though I didn't have to do much. I hole punched the top of the chart and hung it using a spring key chain so it can be flipped to which ever side we need and can be moved about as needed.

In short I would recommend these products and the seller. The price is reasonable for the quality and the seller often has deals and contests. There is not a lot of choices at this point but I think a lot is covered by what is there and fills the need as I stated up top.

So here are some links to follow to learn more:
Main Signing Families web-page

411 Voices:  Professional Woman giving you information on all sorts of topics.

Thanks to EVERYONE who helped the kids and I get these wonderful resources and I hope you pass the info on to anyone who may be able to use these tools!

Thanks to Phil the Canadian for being my editor.... if I screw it up again... it is still his fault. *grin*

Thursday, May 5, 2011

Life Is Full Of Stuff.....

Life is full of stuff... good, bad, and just everyday stuff. It doesn't matter what it is as long as you take that step and get through it. The key is to hold tight to the good for it will see you through. Let go of the bad for it only drags you down, but learn from it first. And pay no mind to the everyday stuff that makes no real difference. And smile often, love for real, and find peace. ♥
 We all cope with life differently. Some people worry about every detail of every day in every way. They go insane over the smallest hitch in the works. They get old really fast. Some people are so laid back that their only view is up. They don't even think of the important steps we need to take to move forward so there they sit. Some people cruise forward at a good clip but miss too many of the important side roads that would make their life better, brighter, or just plain happy.
No way is totally right or wrong. The true "right" path is a blend of every path, a balance. It's like the stew of life. You need the meat ~ family, faith, wisdom. You need the potatoes ~ work, community service,  world affairs. You need the healthy stuff, the veggies ~ doctors, exercise, mental health days. But none of that would be much with out the spices you add to make it taste good ~ fun, pleasure, sunshine, and gumdrops (yeah, I know, but since we all like different spices I went generic and silly... deal with it)
For the Life Stew to taste right, to be good, it needs a bit of everything in the right measure. Balance is the key, the goal, the key ingredient to a happy life. Now, how do you find that key?  The simple answer is you already have it. The complicated answer is that you may have it but now you have to find it. To make things even more complicated, I have to point out that no one can tell You how to find or use the key. Every self help book claiming to have it is full of cow patties. They can give you suggestions, you can take them and there is a maybe kind a chance that they will work, simply because no one is you.
You know what you have to do. You know what you want to add to your life. You know what you need to take out of it. You know what makes your heart smile. The key can be found in mixing all of that together and finding the balance of the good, the bad, and the little doesn't mean anythings. YOU know, even if you don't like to see it, feel it, or deal with it.
It's worth a moment's pain, off kilter feeling that dealing with getting everything in order will bring, to have that contentment and peace that balance can bring. As a bonus, if all that is ok with-in you, the day to day crap that life throws at you will be less to clean up. When it flies you will know what to duck, what to deal with, what to throw back, and what to laugh at.
Life will never be so perfect that you will ever forget every pain, but it can be perfect  enough to allow that pain to pass quickly and quietly. Life will still have pitfalls, pot holes and even a mountain or two, but you will see more of the wild flowers, stars and good things that line the road even as you overcome the latest obstacles. You will also find that it is easier to move through life with a lighter load of unnecessary garbage being towed along. 
So what makes you smile till your eyes twinkle? What in life gets your feet tapping and your mind laughing? What makes IT all better? That's what your life needs more of. 
So what ingredient turns your life sour. What person, place, or thing (what Noun?) makes your life harder just by being there? Do you really need it? If not, then find it somewhere else to be. If you do, how can you turn it sweet? 
What just is? What part of your life can you not do much about but deal with it? You do what needs doing, what you can do to make it work, then let it go. Don't worry about it. Don't hold on to it. Don't ignore it. Just deal with it and move on.
These questions are simple, much simpler then life, but if you apply them when you can, answer them honestly, and deal accordingly, then you will find that balance that makes life so much easier.
I never claimed to have it all worked out and anyone who says they have is full of the same cow patties that fill self help books. If you are honest with yourself, do the best you can, and follow your own moral path then you will be closer then most. Life will still be rough sometimes but I can promise that you will be better prepared to deal with it. You won't always remember to hold tight to the good, learn from the bad and let go, and to just deal. It's a human thing. But you will still come out on top because you will feel it click back into place when you get around to remembering.
Find love, find contentment, find peace......