Tag Archives: Love That Max

Day 1527: A Girl Caged at School. What Happened to the Human in Humanity

Humanity

hjʊˈmanɪti

noun

the quality of being humane; benevolence.

It’s 12 : 00 PM on day 1527 of my journey towards independence and I’ve managed to brush my teeth, pray, read Isaiah 14, publish my Disability of the Day feature, read and comment on A girl caged at school: A disturbing reminder that we are our kids’ protectors , promote my Educate Generations campaign– Simon Magid donated $20 yesterday (thank you Simon) which brings my total raised to $850 only $1 650 more to raise to reach goal 🙂 – feed myself egg with bread and a banana for breakfast and continue promoting my campaign – still on $850 but I’d like to thank my friend Catherine for asking her friends to donate to Educate Generations in honour of her birthday (thanks for the support Catherine you’re THE BEST!!!! 🙂

This morning I read A girl caged at school: A disturbing reminder that we are our kids’ protectors on Love That Max and I was outraged it was beyond me how a teacher could cage a little girl in her classroom there is a nothing a child could do that would warrant being caged I read stories like this and wonder what happened to the human in humanity.

Day 1474: The Blessing of Visible Disability

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“Sure, people with invisible disabilities don’t experience nearly as many physical accessibility concerns. The social justice accessibility, the value of our worth, the question of our validity in a diagnosis that may not fit in a diagnostic box: That is what truly makes our disabilities invisible.” – D, What it’s like to live with a hidden disability

It’s 12 : 24 PM on day 1474 of my journey towards independence and I’ve managed to pray, brush my teeth, read Proverbs 12, publish my Disability of the Day feature, stretch my hamstrings, practice sitting up straight to strengthen my core muscles, feed myself egg with bread and a banana for breakfast, work on my upcoming campaign – I was thinking of having someone smash plates of whip cream in my face for charity it seems kind of childish but I’m seriously considering it – spend time outside -it’s such a beautiful blue-sky day outside I love being in nature 🙂 – and listen to music.

Yesterday I read What it’s like to live with a hidden disability – an eye-opening guest post on Love That Max about what it’s like to live with an invisible disability – for most of my life I hated the fact that my wheelchair made me stick out like a sore thumb but after reading this post I realize that my “disability” being visible is actually a blessing in disguise the fact that people can see that I’m challenged gives me access to services and resources that would have otherwise not been available to me.

Day 601

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Sometimes you’ve got to fight fire with fire – that’s what I learned today 🙂

It’s 4 : 32 PM on day 601 of my journey towards independence and I’ve managed to brush my teeth, feed myself bread and baked beans for breakfast, drink Green Tea by myself, publish my Disability of the Day feature, publish my Kid of the Week feature, read a few posts on Love That Max, feed myself Spaghetti Bolognaise for lunch – made a huge mess probably should’ve used the knife with the fork and not the fork by itself oh well – drink pineapple juice by myself and work on my book The Accidental Philanthropist.

Today reading Parents of Kids With Special Needs: A Bill of Rights on Love That Max got me thinking about the fact that people who have special needs have rights too I was raised to be polite especially to people who are older than me so even when people treated me like part of the furniture I would let them but no more the next time somebody talks about me and not to me while I’m sitting right there I’m going to say something my politeness prevented me from saying all my life hey I’m right here please don’t talk about me talk to me. Do you fight fire with fire when necessary?

Day 389

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The best inventions of today are not necessarily the most complicated but they have changed the way we live forever – that’s what I learned today 🙂

It’s 7: 23 PM on day 389 of my journey towards independence and I’ve managed to brush my teeth, feed myself pancakes with coconut and sugar for breakfast, publish my Disability of the Day feature, tweet about my Clean Water For All Campaign – no luck – listen to music – I LOVE Adam Lambert‘s music, I listened to If I Had You and For Your Entertainment about a HUNDRED times –feed myself yoghurt for lunch, go to physiotherapy, watch TV and feed myself rice and curry for dinner.

As you know I am not one to do something just because other people are doing it but after reading A thank you to Steve Jobs from a special needs mom on Love That Max and seeing how the Ipad app, Proloquo2Go, has helped Ellen (@lovethatmax) and her son, Max, communicate – Max has a lot to say but his speech is affected as a result of Cerebral Palsy – I feel compelled to say RIP Steve Jobs and thank you for creating the Ipad which has made a tremendous difference in the lives of those who have special needs. Take a look at the video below to see how Max uses the Ipad to talk to those around him:

Are we connecting on Twitter? If not, say hi at http://twitter.com/Nisha360

If you’ve given to my cause or you can’t give now, please help me by sharing my cause with others. You can tweet about it like my friend Stan Faryna. This is the tweet he uses: @Nisha360 is a brave, smart young woman trying to make a better world for us all. Please help her do an amazing thing. http://bit.ly/hC7vOu

Stan’s very sweet for saying so, but feel free to write what reflects you best.

Thanks to all my friends out there who are helping me make my dream come true: to make a better world for all of us!

Day 346

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Variety is the spice of life. – Author Unknown

It’s 7: 38 PM on day 346 of my journey towards independence and I’ve managed to brush my teeth, feed myself an avocado sandwich for breakfast, read 9 ways to always have hope for your child with special needs on Love That Max, tweet about my Clean Water For All Campaign – no luck – watch TV, tweet and Facebook about my campaign –still no luck but hey I tried my very best I asked and asked and asked and I will get up and do it all again tomorrow because I refuse to sit back and wait for someone else to change the world when I can do it myself – feed myself rice and curry for lunch, watch some more TV, feed myself rice and curry for dinner and brush my teeth once more.

As I’ve mentioned in one of my previous post August is Women’s Month here in South Africa and that in combination with the fact that I’m always trying to do something I’ve never done before compelled me to interview one of the most extraordinary women I’ve had the pleasure of meeting on the World Wide Web. Take a look:

Ellen Seidman: Warrior Mom

Ellen and her son - Max

For those who don’t know, who is Ellen Seidman?

Ellen: I am a mom of two, a magazine editor, a blogger, a do-er, a dreamer.

How, when and why did you start blogging?

Ellen: I started blogging to help inspire other moms of kids with special needs. I’d had a very rough time during Max’s early years, and I wanted mothers out there to know that things do get better. I never imagined how much I’d be inspired in return.

What advice would you give people who are thinking of starting their own blogs?

Ellen: Read lots of blogs and see what makes them must-reads. Also, find a blogger mentor—someone you look up to—and ask for their advice.

What were your biggest challenges when you first started blogging?

Ellen: Finding the time! That’s still a challenge!

Do you sometimes feel the need to censor what you write for fear that you might in some way hurt those that you love?

Ellen: I never, ever write anything that would embarrass my son, either now or years from now when he might someday be able to read this blog.

When I read your posts I more often than not think wow she is an extraordinary mother do you see yourself that way?

Ellen: Really, I see myself as a mother trying to do her best. But thank you.

What was your initial reaction when you found out that your precious baby boy had Cerebral Palsy?

Ellen: By then, we were very aware of his challenges, so the diagnosis itself was not a surprise. They were just two words. Max was bigger than the CP.

How do you feel when all people see when they look at your son is his “disability”? (I feel like punching someone when that happens to me lucky for whoever that somebody is at the time I was raised better than that LOL 🙂 )

Ellen: It’s hard to tell what people are feeling when they look at my son, though I do see the pity in their eyes at times. “I’m so sorry,” people will say when I tell them Max has CP. “Don’t be,” I’ll say. “He’s an awesome kid.”

How has your son having Cerebral Palsy affected your marriage?

Ellen: I am more in awe of my husband than ever for all the help he gives to Max. I never know what vast amount of patience and dedication he could have! I could do without the farting contests, though.

Thank you Ellen for graciously answering my questions it’s been a great honour sharing you with my readers. To find out more about Ellen and what she gets up to on a daily bases visit her blog at www.lovethatmax.com

Are we connecting on Twitter? If not, say hi at http://twitter.com/Nisha360

Stan’s very sweet for saying so, but feel free to write what reflects you best.

Thanks to all my friends out there who are helping me make my dream come true: to make a better world for all of us!

Day 344

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The miracle in the miracle lies in being able to see it – that’s what I learned today 🙂

It’s 7: 09 PM on day 344 of my journey towards independence and I’ve managed to brush my teeth, listen to music, tweet about my Clean Water For All Campaign – Carolyn and Kurtiss made donations totalling $117.69 – Carolyn and Kurtiss heard of my story through Bonnie Squires– thanks guys 🙂 – watch TV, feed myself an avocado sandwich for breakfast, tweet about my campaign some more – Betsy – one of the readers of this blog – made a donation – thank you Betsy I appreciate it more than you’ll ever know 🙂 – take a nap – I don’t usually take naps but I wasn’t feeling well today so I decided to – watch some more TV, feed myself rice and curry for dinner and brush my teeth once more.

Last night I was reading Let’s talk about miracles, big and small on Love That Max – I read it as often as I can somewhere along the line I started caring about everybody involved – and commented My miracle moment happened while I was lying on my operating table just before my operation – I had to have surgery done on my back when I was younger due to the fact that I had Scoliosis – I realized that none of what society said mattered actually mattered not the houses, the cars or the money I remember thinking Please don’t let me die I haven’t done anything yet the reason I shared this comment with you was to remind you not to chase material objects or money but rather to chase what makes you whole – I feel most whole when I’m writing and/or giving – and be grateful for what you already have. Do you recognize miracles when they happen to you?

Are we connecting on Twitter? If not, say hi at http://twitter.com/Nisha360

Stan’s very sweet for saying so, but feel free to write what reflects you best.

Thanks to all my friends out there who are helping me make my dream come true: to make a better world for all of us!

Day 332

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It is not good to know more unless we do more with what we already know. – Bergethon, R. K

It’s 7: 49 PM on day 332 of my journey towards independence and I’ve managed to brush my teeth, watch and donate to the telethon held to raise money for the people of Somalia – I already made my donation to the World Food Programme but I didn’t tell my father that and coaxed him into making anotther donation because I wanted to teach my sister the joy of giving anyway coming back to the telethon 1.2 million rand was raised I am SO proud to be South African today 🙂 – feed myself banana for breakfast, tweet about my Clean Water For All Campaign – no luck – visit my favourite blogs Love That Max, Chasing Rainbows and Bird on the Street, feed myself rice and fried fish for lunch, watch TV, feed myself pasta and fried chicken for dinner, brush my teeth once more and help my brother act out the play that he wrote.

Yesterday as I was writing a post publicizing the telethon that took place this morning (if you have no idea what I’m talking about refer to Day 331) I realized that the SABC – South African Broadcasting Corporation – although had the best intentions in wanting to raise money for the people of Somalia were a bit lacking in the knowledge of how to use the internet to publicize the upcoming telethon – I spent hours online looking for the telethon phone number eventually giving up and deciding to wait until the telethon was going on to add the number to my post – so today I am going to give you some tips on how to make the internet work for the philanthropist in you because I believe that knowledge is most powerful when it is shared. Take a look:

How to use the internet to raise awareness and money for your favorite charity: Things I wish someone had told me before I entered the world of philanthropy

Make sure that the charity you support is registered – most charities will display a tax/EIN number on their respective websites if they don’t email them and ask for it

Find out whether your charity is linked to a fundraising website e.g. Firstgiving, Justgiving, My Charity Page – the advantage of using a fundraising page to raise money for charity is that you as the fundraiser don’t have to do anything – it’s fully automated – and there’s the added benefit of being able to receive donations from all over the world twenty-four hours a day with the only disadvantage being that the fundraising website gets to keep a small percentage of whatever you raise

Set up social media accounts e.g. Twitter, Facebook and connect with people who can identify with you – you will often find me asking people who have been affected by disability to make donations to my campaign because I know that they know how hard my life is.

Create a chain – mingle with the people that your donors interact with and tell them about what your trying to do chances are that they will donate too and when that happens you have to start the process up again and so on and so on

Don’t pester people – if someone says that they can’t donate to your cause for whatever reason accept that with grace and move on don’t keep sending them Facebook messages/tweets they will get very irritated with you and unfriend/unfollow you

Are we connecting on Twitter? If not, say hi at http://twitter.com/Nisha360

Stan’s very sweet for saying so, but feel free to write what reflects you best.

Thanks to all my friends out there who are helping me make my dream come true: to make a better world for all of us!

Day 318

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Love must be sincere. Hate what is evil; cling to what is good. – Romans 12: 9

It’s 8: 04 PM on day 318 of my journey towards independence and I’ve managed to brush my teeth, hang out with my mother – she didn’t go to work today because my brother was sick – feed myself Chapati and chicken curry for lunch, tweet about my Clean Water For All Campaign – no luck – go visit my brother in hospital – he’d been wheezing the whole week and we finally took him to the hospital where the doctor decided to keep him until he’s chest clears truth-be-told I think he’s having a ball watching all this favorite TV shows with my mother to keep him company – watch TV and feed myself rice and curry for dinner.

A couple of days ago I read Slams against people with special needs…and one bit of awesome on Love That Max and I like Ellen – blogger at Love That Max – was furious with a commenter on News Aggregator who posted a picture of a little girl who has Down Syndrome with a caption underneath it that read I can count to potato although I didn’t know quite what to say to the media about how they portrayed “disabled” people until today HOW DARE YOU those of us have “disabilities” have to work twice as hard and twice as long to accomplish the simplest of tasks and quite frankly we don’t need to open magazines to find that everybody’s laughing at us and not with us furthermore if you are an editor of a magazine that allows tasteless comments to be published in your magazine I will come after you I maybe a small fish in a big pound but you will hear me when I roar. Do you hate what is evil but fail to do anything about it when you see it around you?

Are we connecting on Twitter? If not, say hi at http://twitter.com/Nisha360

Stan’s very sweet for saying so, but feel free to write what reflects you best.

Thanks to all my friends out there who are helping me make my dream come true: to make a better world for all of us!

Day 317

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You’ve got to turn your passion into a business – that’s what I learned today 🙂

It’s 9: 03 PM on day 317 of my journey towards independence and I’ve managed to brush my teeth, feed myself a hotdog for breakfast, tweet about my Clean Water For All Campaign – no luck – read Lessons in overcoming adversity from the poorest parts of the world on Love That Max – it was an honest look at the lives of women on this continant – feed myself rice and curry for lunch, watch TV, tweet about my campaign some more – still no luck 🙁 –feed myself whole-grain bread and oranges for dinner, brush my teeth once more and compiled a post for Youth Voices – a group/website started by friends of mine that aims to connect youth who make a difference with youth who want to make a difference.

This morning I was thinking about all the stuff I thought about last night paying for my own medical aid, half the utilities and buying groceries all of which are things my parents can more than afford but as we’ve established in one of my previous post I am NOT the mooching type with that said I am going to buy my own domain name from WordPress and get some advertisers onboard defying everybody who thought that I would never amount to anything in my life although I know that what I’m doing is not really about them. Are you under the illusion that to be an armature is to love the game?

Are we connecting on Twitter? If not, say hi at http://twitter.com/Nisha360

Stan’s very sweet for saying so, but feel free to write what reflects you best.

Thanks to all my friends out there who are helping me make my dream come true: to make a better world for all of us!

Day 315

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Children are the brightest treasures we bring forth into this world, but too large a percentage of the population continues to treat them as inconveniences and nuisances, when they’re not treating them as possessions or toys. –Charles De Lint, The Onion Girl

It’s 7: 29 PM on day 315 of my journey towards independence and I’ve managed to brush my teeth, feed myself hotdog for breakfast, tweet about my Clean Water For All Campaign – no luck – feed myself rice and curry for lunch, tweet about my campaign some more–still no luck 🙁 – read Sablog: a “blog” by Sabrina, age 6 on Love That Max – a charming post about life through the eyes of a six-year-old –watch TV, feed myself sweet potato and plain yoghurt for dinner, brush my teeth once more and watch some more TV.

Yesterday my mom was talking to my brother about something and she said you must try to be perfect to which he responded we’re not made to be perfect otherwise what’s the point and in that moment I felt the truth of his statement because I had always believed that perfection was an illusion and that we should measure our worth not by the things we have but rather by the things we do. Has a child in your life ever said something that made you see God in them if only for a moment?

Are we connecting on Twitter? If not, say hi at http://twitter.com/Nisha360

Stan’s very sweet for saying so, but feel free to write what reflects you best.

Thanks to all my friends out there who are helping me make my dream come true: to make a better world for all of us!