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09/02/13

Permalink 02:30:00 pm, by eleanor Email , 1013 words   English (US) latin1
Categories: thoughts, The Law, Advocacy

BACK TO SCHOOL FOR CHILDREN WITH DISABILITIES

America's children are returning to school this month. Unfortunately with the  recent shootings in our schools security concerns have escalated . There is increased anxiety among our children returning to school this year. And also among their parents who are sending their kids to our local schools.

There has always been anxiety for some children returning to school before  the shocking recent events.  After all they are going to a new grade, a different class, meeting new teachers and new children in their class.  Parents also have some anxiety about how well their children will fit into the new classroom and what will the new teacher be like etc..

The anxiety level of children with disabilities can be up even higher because they know they're not like everyone else. When your young and insecure in new situations, being with people like oneself is easier. Actually I have to say that I don't think it's that much different with older people.  I think it's part of our makeup to be more comfortable with people that are like ourselves. And people can feel threatened and ill at ease at first with people who are different.

I think part of the problem is because they don't know enough about the new and different people. They don't know what to say, or how to react to people who are different from those they know. Unfortunately without guidance they may react by ignoring them or bullying them and even physically hurting them.

If bullies come together, they can reinforce their behavior and harden it into a pattern in their life. With reinforcement and a lack of other viewpoints, bullying may become second nature to them into adulthood in the office or home not just the classroom or schoolyard.  With the right situation and attitude, this can develop into violence, or a hate crime.

But what about the children that are being bullied.  What happens to them over their lifetime.  And we're talking about children with disabilities in this blog but I want to be clear that I know it's not only children with disabilities who are bullied.  Many children that are very bright, poor or very shy and sensitive can also be targets for bullying or shunning as well.  Any difference can draw bullying.

But 80% of children who have disabilities are bullied. And since 1975 after the Disabilities Education Act (IDEA) youth ages 3-21 with disabilities (5.3 million) were required to be provided a free and appropriate public school education. By 2009, 95%  of 6 to 21 year old students with disabilities were in regular schools, 3% were in separate schools, 1% in private schools by parents and 1% in a separate residential facility. Of those in regular schools approximately 72 % spent a substantial amount of time in regular classrooms.

Children with Developmental Delay, Autism, Hearing or Vision impairments , Speech or language disorders, orthopedic, neurological, intellectual , emotional or other health impairments are all in our public schools. These children or young adults are there to learn the academic subjects but they also will learn their worth in our society. Socialization occurs in this setting which can effect a child's self esteem as much as success in the subject matter.

Children that are disabled are just more fragile because they have more to overcome.  But all children who are bullied in school in the early grades especially are affected detrimentally in their academics and the development of social awareness, maturity and feelings of competence. They have to learn over time when to put up that tough skin to protect themselves from bullies. In fact there are organizations and clinics to help these children outside of the school environment. That some make up for it very well is encouraging. Self esteem is critical to learning and success in life.

It is critical that children and young adults with disabilities have a quality education geared toward their strengths and accommodating their weak areas. Children become adults with disabilities and want and need to go out into the world, support themselves and have as full a life as possible.

Unfortunately they have a much higher rate of unemployment. As of July 2013 the unemployment rate is 14.7% v.7.4 for the non-disabled. And even more significant 8 out of 10 Americans with disabilities are out of the workforce. And shockingly hundreds of thousands of people with disabilities earn much less than the minimum wage in segregated work.

What we are talking about is equal rights for the disabled. Over many decades the disabled have been targeted both for assistive help and for discrimination. But mostly for discrimination and at times elimination. See the Disability Timeline: http://isc.temple.edu/neighbor/ds/disabilityrightstimeline.htm

Today we have built up a body of laws to positively give equal rights to the disabled in our country . Yet attitudes of some people  have not caught up  with what's right, just and humane, to say nothing of legal. The bullying of students in school has become so serious a threat to these students being able to have an equal right to an education that the The United States Dept. of Education has sent a letter to all schools.  In the letter is an overview of the school's responsibility  under the Individuals with Disabilities Education Act (IDEA) in regards to the bullying of a disabled student.  See copy here:

http://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/bullyingdcl-8-20-13.pdf

But parents are equality important to protect against unfair bullying of anyone. It's repulsive to me to pick on a person who thru no fault of their own is different. What kind of a society are we? Kindness, empathy, learning about people who are different.  To me this is what we should strive to be. Not mean spirited,cruel and closed off to new ways of looking at the world around us.

As parents send their children off to school it's a perfect time to discuss this bullying issue . This is an important time emphasize what you know is the right behavior to your children. My parents did with me and I did with my children. How about you? This can make a difference to a lot of children.

 

"Whether small or large.

moments of grace

shape who we are."

       Susan Schwartz 

    garden pics 7 -7 033

                                                                                                  ellie

08/10/13

Permalink 01:40:00 pm, by eleanor Email , 675 words   English (US) latin1
Categories: my life, Thoughts

MS AND DISABILITY WITH HEAT AND HUMIDITY

EEEK WHAT A BUMMER!!!!!!

 

Living here in upstate N.Y. has always been manageable for me. As I love to be outdoors and garden (see my previous many blogs on the subject) having a nervous system that's already slow due to MS get hit with heat I have had to adapt. And adapt I have.

I use ice packs under my hat, around my neck chest and wrists as needed. Then there are fan's, sprays, cool drinks and just plain hose on myself. I also have two major shady retreats; the front porch and the deck out back under the canopy. At one time we had shade from our neighbors old majestic pine trees. But alas they cut down all the lower branches so we substituted with the canopy. It's not as effective but it works. Then equally important would be more of the little shady rest spots thru our property that I garden in that I used to have. We usually have 10 -13  90 deg. days during the summer but not lasting more than a day or 2 at a time. Not this year we just are coming off a 6 day heat wave of 90 ++ temps. With horrendous humidity in the 70.s. And we went from a dry spring to monsoon like summer rains which kept the humidity up. It's the humidity that's the killer with the heat. No wonder more people die in a heat wave than a hurricane, tornado or earthquake. And the people around me are feeling maybe a bit like I am normally as the heat slows down their neuron conductivity a bit! I even had a person relate to me this feeling with empathy? I thought maybe it would bring a new realization of what it's like to be SLOW ME. Walking so slow..thinking so slow..doing everything so slow..what a drag !! 

Well the heat wave has passed and the torrential rains too! Life is much better for me. I'm not getting stuck to the ground when I'm out, can walk further, think better and not exhausted even when I'm in air-conditioning. And the people around me are back to normal!  I hope their experience will show new empathy .

As I who was once so zippy just keep getting slower and slower but I can relate to how I once felt when people tell me of their hiking,biking tennis events. How nice it would be if the remembrance of that itty bity slow down they had brought a realization and understanding of how I must feel. And that they realize I want to do so much  but it requires more time, rest periods, and sometimes a little help. And sometimes a big help and then sometimes no can do..sorry!!!

I must sound like I'm just griping up a storm. But I know I'm not alone in feeling this way. I read other blogs of people with MS and as I also was a physical therapist I heard this from my MS patients as well as those with other disabilities. A common problem was that that people didn't understand they were doing the best that they could. When people with friends or relatives with MS feel slowed down from the heat it's a perfect opportunity take a leap into their friends life. And then recognize that it's their nervous system being slowed they can get a glimpse of what is normal everyday for someone with MS. And then in heat and humidity how they must really can lose function!!

In fact back in the 1800's a dunk in a hot tub was a way of determining if the patient had MS as it brought up the symptoms which was at that time a confirmation of MS. Well, the humidity and heat are back. The heat not so bad but it's the humidity that's got me from walking to a few limps only and brain dead today! I can manage the heat much better than the humidity.

Back in my home with air conditioning. Thank God for Air-conditioning!! And knowing that Fall is on the way!!

ellie

 

07/06/13

Permalink 03:53:00 pm, by eleanor Email , 814 words   English (US) latin1
Categories: my life, Thoughts, Adapting Activities, Gardening

WHY I GARDEN

 

"If you work with your hands,
you're a laborer.
If you work with your hands
and your mind,
you're a craftsman.
If you work with your hands
and your mind and your heart,
you're an artist."
-Saint Francis of Assisi

July backyard-14

 

If I take this quote from Saint Francis of Assisi and compare it to how I feel about my gardening  I am not just a laborer or craftsman I am an artist.  Because I truly love to garden and my heart is full because of it.  Now there are times I do feel like it's labor and use knowledge and tools to be skilled in what I do like a craft person would. But the love I have of it must make me an artiste of gardening. 

At one time when I was younger before Multiple Sclerosis started affecting my physical body and cognition etc. I suppose I could consider that I was an artiste of running, jogging and then walking because I  loved to do these activities and felt so wonderful when I did them.  I also could also say I probably was an artiste in my swimming . As a past instructor I knew my strokes but the movement of my body thru the water was what I loved whether it was in the ocean, lake or a pool. Again I can say It was the same for for hiking, biking and playing tennis as they all gave me such  pleasure and everything just felt right.

But then all these physical activities became nothing more than labor. Even though I tried to use my knowledge of the sports and as a physical therapist of the body to try to compensate for what I did it eventually became joyless labor. So over the years I was forced to give up running then jogging then walking any distance. Also hiking, biking and finally swimming as one lap in a pool didn't cut it with me. I also had earlier given up tennis which I loved too. But then there was gardening.

When I was busy working and with the other things in my life gardening had taken a back seat. Because heat limits my ability to move etc. gardening after work was not a possibility. And to  garden before I went to work would limit what I could do at work due to fatigue. So my husband filled part of my void and I enjoyed what he did and my own limited work on weekends.

But after I retired and MS relapses slowed down a bit and I became more comfortable with my limitations I was quite ready to really adapt and try to push the boundaries of what I could do. Also the fact that my son's were around and able to put in ramps,raised beds and were there when I need that strong body made it possible.

July backyard-1 

I get up each morning in the spring  and summer and look out the back door and front door to see my gardens which I love. In the spring when my bulbs are starting to come up requires an assessment daily as well as mulching and weeding. Then the 2 apple trees bloom and the Japanese maple comes to life. Then it's lilacs, peonies and roses that are filling my gardens out back as well as the blooms in my home. And quietly out front and down the sides Hostas, Coral bells and all my bushes and ground covers are start to push through the soil and bud and bloom, thriving and making my world better. My son's vegetable garden is now thriving as well as my raised salad bed.

And yet there is so much more to come!! Hydrangeas and Day lilies will meet with the Irises,and Corn flowers Gaillardias and Hollyhocks. Oh and so so much more! Oh yes there's the birds that come to the birdbath under the Japanese Maple tree and then the butterflies arrive en masse when the butterfly bush blooms.

And to make it all work in the morning before it gets too hot between my tending my garden I have a nice shady area with a chaise to take a break and watch, meditate and read and cool down. There are other areas with shade and a chair throughout my garden's too. And our wraparound porch with window boxes filled with flowers and hanging plants caps it all off at the end of the day.!!

I get my Vitamin D, good wt. bearing aerobic exercise and flexibility and balance exercises. And definitely a little muscle strengthening too. And I'm learning all new information about plants and gardening. Actually getting better computer skills as I keep  charts and I've gone back to photography too. How could I not take pictures of my garden flowers.   And thanks to my son's fresh vegetables in my diet.

Rose bower-10

What more could I ask for ?

ellie

05/29/13

Permalink 12:26:00 pm, by eleanor Email , 291 words   English (US) latin1
Categories: Advocacy, Thoughts, information

World MS Day 2013

http://www.worldmsday.org/wordpress/wp-content/uploads/2013/02/WMSD29May2013_english-e1362406476687.jpg

 

Today May 29, 2013 is the day we remember the over Two Million people around the  world that are living with Multiple Sclerosis. And "living with" is an important description.

MS starts in the young adult (usually diagnosed in the 30's) and lasts their lifetime. Some people are lucky and they have a milder form and can remain relatively active longer. Others are not so lucky and severe disability comes much too soon. And no one now knows who will end up with what form.

However, all those of us with MS have our lives changed forever. Having lived with MS for decades this I know. They will have to learn to be strong, flexible and be able to rise above the effects of it on a daily basis. When you consider that when you wake up you don't know how you will feel and what you'll be able to do each day. Can you go out to lunch? If your still working what adjustments do you need to make? Is it a cane or wheelchair day. Can you last the full day? How can you hide that fuzzy brain due to cognitive involvement and not appear inept? And how can you let people know it's not them it's because your just so tired and it's going to get worse if you can't shut down and rest that crazy Brain!

But when you have a support system around you it makes such a difference. I think the pictures taken at our local MS Walk here in Saratoga Springs NY show the feeling I mean.

P1160780P1160820

DSC08852DSC08943

DSC08857

WERE GONNA LOVE YOU THRU IT!!

What more can I say except to go to : http://www.msif.org/about-us/advocating-and-awareness-raising/world-ms-day/world-ms-day-2013.aspx 

for more wonderful stories, mottos and information on World MS Day.

Cheers,   ellie

05/16/13

Permalink 05:15:00 pm, by eleanor Email , 760 words   English (US) latin1
Categories: my life, Thoughts, Adapting Activities, Gardening

I AM WHO I AM

1936 future Olympian                                                                                                                                                                                  But who am I really ?  Am I the same person born in 1935 on Father's Day in the middle of the depression?  How much has my life experiences due to Multiple Sclerosis changed me?  These are some of the questions I ask myself.  In a month I will be 78.  Did I think this is how I would be looking back at my life at the age of 78?

No not all.  My image of myself in my retirement years when I was in my twenties before MS was a factor in my life was that I would still be quite active. I would be like an older woman I admired. I would still be riding my bicycle to pick up a few groceries like a favorite bottle of wine, gourmet  cheese and wonderful loaf of bread. Then I would stop at a favorite place of mine "Yaddo" for sitting and reading my favorite book of poetry. I would also belong to a very interesting book club with fascinating and a diverse group of people. I would have a season's ticket to the opera, ballet, the symphony, and various theater groups. And I would be involved in my community as well as working as a Physical Therapist.

Of course I would look back on my wonderful trips including hiking and biking trips and playing tennis. And most important of all I would still be doing them! I would also be sharing a lot of these with my wonderful husband and my 2 sons and maybe grandchildren. And now that I have been retired for years I would  have  the most gorgeous garden. I would put flowers in every room for all the guests I would  still  have.  Having dinner parties, women friends in for tea and still having the energy to do so much I wanted to do.

Oh MY how the reality of my life experience has changed thanks to MS. Now it is not that I haven't done some of those things I mentioned above. Or that I haven't been married to a wonderful husband and have two wonderful sons.  But the truth of the matter is when I think of MS and how it has changed my life all I can really think of is that it has been decades of fighting fatigue and loss of function.

And except for the wonderful times when I was in a remission I have been losing the battle and have been having a continual loss of function in all spheres. I sometimes feel that my life has been spent trying to accept the losses and to find ways to replace my lost abilities by using assistive devices , mobility aids and giving activities up or finding less demanding activities .

Then there has always the question of what will MS do to me in the future?  I and others with this disease have to deal with the reality that eventually we will be losing even more function due to MS.  We hope that it's slow but it makes what we can do today more precious!  Even if like me we willingly  exhaust ourselves at times because we fear that in a few years maybe we won't be able to do something we love. We have to adapt and our family has to adapt too!

I shared on World MS Day website that my motto was the Serenity Prayer.  This is a prayer that I have used for years. In fact many years ago my son put it on a poster in a frame which I have placed in the book case across from the bottom of my bed.

Serenity prayer 

This crazy disease effects our life in so many ways. So if you meet me and I look like I must be crazy exhausting myself gardening or some other activity  there's a deep seated reason for it. I want to do what I can while I can and my goal is a lovely perennial garden by age 80. I wouldn't be me without a goal.

Or if you see me rested  and I'm really looking good and acting real social ..That's because this is a special time for me. I miss being out around people so when I'm up to it it's a precious time. But, I'm sometimes I'm afraid I'm like a person who has been inside too much and and may act inappropriate.

But this is who I am ...same person under different circumstances. And I still want to do all I can as long as I can.

 

 house improvement pics and flower vase 040

Vase with flowers from my garden

ellie

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Ellie’s Rules for Coping Well with MS and Disability
Get Knowledge
Admit What's Happening
Set a Functional Goal
Adapt Lifestyle
Attitude is Everything
Be an Advocate
Live Life to the Fullest
Laugh Often
Then All You Need is Love
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