OUT OF SIGHT OUT OF MIND

I am disappointed , “Hayden DOES NOT SUFFER FROM Dwarfism”…..the reporter who wrote this should really sharpen her skills…Does he look like he is suffering?…But what is sad is that this is not the first time and it wont be the last time this happens. I don’t blame the children, because children can be cruel, but children learn by example. In this case the Principle has failed dismally in making a change, he could have changed the mind-set of the children in his school, he could have instilled pride into his students by making them aware of difference , by teaching them acceptance, by putting a stop to ignorance…. he could have done all of this but instead he chose to say that this child does not belong in main stream society, he could have taking 5min of his time to finds out more about this child’s condition on google,  but he said this  the child needs a “school for mentally disabled kids” he needs a “more suitable school”…. and the Western Cape Education Department says “They are aware of the situation”  as if that’s of much help. Does he even know what a bully is? He obviously does not care… as the old saying goes “OUT OF SIGHT OUT OF MIND”, this is why stigmas and ignorance grows How do we expect change to happen when you are left with IGNORANCE  in charge…. What if his child was this little boy?

What do you think of this??

What do you think of this………..? I don’t know what to think right now ………..but I have been bombarded by people sending me this link thinking I would see some kind of humour in it, and what confuses me the most is the OPRAH the queen of talk shows who has interviewed Little people on her show and knows exactly what they face from the ignorance of a few in society allows this to show on her network????? So I ask what do you think of this.

Prayers for Sydney Lee Williams

18-month-old-baby Sydney Lee Williams   is in critical condition after she nearly drowned in her family swimming pool, we know that people should be aware of pool safety  but these things happen … but right now, more than anything little Sydney needs your prayers as she fights for her life in Red Cross Children’s Hospital in Cape Town.

Today I call on my blog readers to please keep this precious little girl as well as  her mom and dad in your prayers. Let’s pray for Gods comfort and healing to be with them during this time of need.

And they said I would never get it right…

  December last year a radio station breakfast show decided it was a funny thing to make jokes about living with Dwarfism and directly poked fun at short stature using the “M” word they just slandered on and on. This bothered me so much because it was so demeaning and discriminating. What got me going was I had so called friends calling to ask me if I had heard the “funny midget” jokes on radio I just could not leave what had happened that morning so I emailed the radio station in question, I did not get a response instead they played a new set of “funny midget” jokes a few days later that was when I took the case to the Broadcastings complaints commition of South Africa, and this was their response after reviewing the case:

“Dear Ms Kay

Your complaint concerning the ******* jokes on ****** has reference.

 We have listened to the material in question and considered your complaint.  We agree that the jokes were in exceptionally questionable taste and it is our opinion that it at least, justifies an internal discussion at the radio station as to whether the internal policy of the station was, complied with.

 The Broadcasting Code, however, only protect race, gender, ethnicity and religion against hate speech. Even if persons whom you represent had been included,  the speech would not have amounted to the advocacy of hatred. In terms of the Code we, accordingly, cannot entertain this complaint.

 We will, however, refer this matter to the station’s management for consideration of their internal policy, and will also refer this to the Chair of the Commission so that the Commission may, in future, consider what steps should be taken about other sections of the community who require protection.

 We thank you for making use of our services.

 Yours sincerely”

 

First of all I did not submit it as HATE SPEECH!! And second you admit that it is in “exceptionally questionable taste”???? So the Broadcastings Commission completely misses the plot…..

 

As you can well imagine I was left very angry so I took it one step further I contacted the Human Rights Commission of South Africa as it states in our Bill of rights “section10” that discrimination of any kind is in violation of the act.  I strongly believe the MEDIA should make a serious effort to be more aware of the jokes and terms they use on live air as it could have a influence on society and it makes it seem that its okay or funny to poke fun at a little person. I sure that any DJ would watch his words when it comes to joking about race so what makes them think its “OKAY” to joke about disabilities?

 (TEXT BELOW QUOTED FROM INTERNET SOURCE)

 “Terminology is important because words reflect our attitudes and beliefs, however some terms we tend to use may NOT reflect how some physically and mentally disabled people see themselves. Using the right words matters.  ‘The names we get called and the status of the people doing the naming can have a enormous impact on our lives”

 So after 10 months of waiting and back and forth emails I got a hearing date at the HRC and I met with the radio station and their legal team and it was just me and my file of facts. At one point I wondered what I had gotten my self into but I just thought well you made it this far and I might as well grab the bull by the horns. So im proud to say we got our official apology, which I tend to post on the Little People of South Africa blog , FaceBook page  You name it im going to spread it, and I guess I can say without shame that I AM SO PROUD of this accomplishment, I promised Leah the day she was born I would fight for her rights and I will make sure I do whatever it takes to raise dwarfism awareness in South Africa

Allowing “Room” of Disappointment

Sometimes I question my self, I wonder if those who you think or should I say expect to understand you really do understand your situation … I have had a heavy heart about a few issues over the past few weeks and what better place to vent that here in the room were my true support lives.

Recently some friends invited us to a show, the setting of this show is based on the old circus style. The mystical enchanted type of show with fairies ad goblins. The reason why they invited me was because the act involves a little person, but he is depicted as a freak and he falls around and basically makes a fool of himself, I decided its not something “I” would want to attend much to the disappointment of my friends, and during the whole “should I stay or should I go” debate someone says “It something you should get over because you could get good contacts for Leah to use in future as there is not much she can do with her life anyway” Surprisingly it was not anger that hit me, the anger set in much later…. What did hit was the shock of someone you love disappointing the support and understanding you thought they had.

These are the very “friends” who say “oh Leah you are so cute, special, a brave little girl”, but yet these “friends” don’t really believe in her ability?  So forgive me if I question my belief in you being a true friend, To me a true friendship conquers boundaries and feeds love and encouragement into any situation, but guess that’s my opinion on what friendship is.

“Have you seen Leah’s clothing, they never fit, the sleeves are long and the pants are rolled up why cant Charmaine just get clothing to fit the child properly, she looks neglected”

I think this hurt the most, in fact what hurt the most is it was said in the company of Simone and Nicole, Leah’s older sisters. I take pride in my 12 year old daughter Simone for clearly stating the following  “ If you haven’t noticed Leah has dwarfism and if you want to find the perfect “fit” shop bought items then I challenge you to do so… you don’t realize how my mum has to take every item into consideration when we have to buy Leah clothing, a simple neck hole can be an issue the reason her jeans are not fitting the waist 100% because she has tiny hips, her legs and arms don’t fit cause they are short and cutting them means she just gets one season of wear so we make a neat turn-up….. consider that before you judge my mom as being incompetent?  … I thought that “you” of all people would understand.

“Thanks Simone mummy loves you lots and I know you got my back!!!! 🙂

So I guess I must not forget to leave room for disappointment because there will be times when you encounter people who “look at the pictures but don’t really read the book” and it seems I have quite a few of them in my life… but not to worry at least I have my Facebook and Blog family and I know when I enter that room the word disappointment is not part of our LP vocabulary.

The little tricycle tour

We recently had a very exciting weekend, We decided to have Leah take part in the Pick and Pay Argus tricycle tour, this is quite a big event in South Africa particularly Cape Town as it the lead up to the big Argus Cycle tour, which usually hosts about 38,000 cyclist who range from professional to those who just do it for love.

This year Cape Town had the pleasure of having Lance Armstrong take part in the tour, so needless to say I saw it as the perfect time to splash out with some “Dwarfism Awareness”

Leah was lucky enough to be sponsored by some good family friends with a Helmet, and a personalized sweater proudly displaying what we as a family stood for. She took part in the 1.5km tricycle tour and although her little legs are not able to reach the pedals just yet she had the full support of daddy who proudly pushed our little bug to the finish line. She was awarded a medal for her participation, and was clearly proud of her achievement and decided to wear it for the rest of the day. It was really emotional for us a s a family because to us it was more than just participating in a fun race, It went far deeper than that, we were there for a cause, we were there to let others see that Leah and all kids that may have physical challenges can achieve anything their heart desires, and more importantly it was teaching Leah that she is a brave, beautiful little girl who has the ability to do great things in life.

As daddy pushed Leah across the finish line I could not hold back the tears, the look of achievement on her little face is a picture that will stay with me for the rest of my life, and it seems the tricycle tour turned into much more for our family, it was as if we bonded a bit more and became aware of how much love Leah has brought into our lives.

The positive that comes out of this is I know that Leah captured many hearts, and I had lots of people asking what “Dwarfism awareness” was about. So if we managed to touch a few hearts it’s a start, ironically things always seem start  small but in the end it could turn into something big, and hopefully it can make a difference one day.

Happy 3rd Birthday Leah

I am very late with this post, but better late than never!!!!!!!!!!!!!!!

I tend to get a wee bit emotional when I think back to the day Leah was born, so I decided to to a blast from the past with one of my older post….. Leah my baby we have hit a huge milestone in your life, you are 3 years old , we have been through so much this past 3 years, but if there is one thing we know for sure we love more and more with each passing day.

The “Special needs mom”

2008 March 4 by Charmaine

This question “What is it like being a special needs mom” was asked over at “What is Normal” at the time I could not find the words to answer that particular question to the best of my ability, but God must have really wanted me to answer that question because today, I was asked the very same question again!! So that is the inspiration for todays post.

Were do I begin, lets start with the truth, Its not easy, If I think back to some of the many emotions I felt from the time Leah was born they start at FEAR, JOY, ANGER, DENIAL, ACCEPTANCE and finally realizing that this little life is totally dependent on you, and its up to you to gear yourself with as much information and support to carry you through each day. So I had to realize that I had to take things one day at a time.

If there is one thing I know for sure God makes no mistakes, I know Leah was given to us for a reason, before I found out I was pregnant my husband and I were living life past each other, he would be doing his thing and I would be doing mine, my girls were at a age were they were also doing their thing and our idea of quality time was taking the kids to restaurants for Sunday lunch, or visiting friend while all the kids played in the back yard, we thought our lives were complete and we had everything we needed. When we found out at my 20 week scan that there was a problem with Leah, my first thought was why was this happen to me? Is it because I never spent enough time concentration on my spiritual life, did I do something wrong? Why was I being punished?!!!!! I cried for days, I was inconsolable and I mentally tried to detach myself from the baby that was growing inside me.

The turning point for me was my Fetal Abnormality Scan, instead of a little black figure squirming around on the screen, I saw Leah in 3D, I will never forget her face and seeing the blood pumping through her veins, seeing her heart beating so hard its as if she was running a race, I then realized the magnitude of this little human being growing inside me, I felt guilty for not wanting to feel anything for her, I realized all she had in order to survive was me. As I left the hospital I remember putting my hand on my tummy and sobbing as I asked God to forgive me for those thoughts of not wanting my child, I was a new mommy after that appointment, I realized that we were all in this together, we needed to unite as a family and I accepted my child and loved my child no matter what was to come our way.

It hasn’t been easy, it’s challenging because you faced with so many obstacles, in Leah’s case we were not informed of all the health issues that surround Achondroplasia, but we will face those challenges, and we will work through them.

I would not change a thing about my life today and neither would the rest of my family, I am constantly amazed at how this little person has brought our family together, we know see life through different eyes and sometimes my husband reminds me of how we THOUGHT we were complete, little did we know that Leah was the missing piece of our puzzle. We have lost some of our old friends, but we have gained a new family, we have met the most amazing people and we have shared in their pain, we shed tears for baby Theo and Little Avery, we felt as if they were part of us, and we prayed together when Knoah was ill and we speak of these people as if we have known them for a lifetime, we make a point of trying to visit all our little friends blogs just to keep up-to-date with the progress everyone is making, and its a good feeling to see how all these families have embraced life and deal with all sorts of issues and still remain positive and happy while doing so.

There will be fears, and there will be tears but I would not have it any other way, for me being a “special needs mom” has made me more tolerant, taught me the meaning of patients, grown my relationship with God, and made me appreciate life, love and family and I thank God for my Little Leah, and the friends we have made along the way.

For Danielle ….

It is with a broken heart I post of the unexpected passing of Danielle Bougard.

Heather, Danielle’s  mother notified us on Friday evening. Danielle held a very special place in my heart and she was especially special to Leah.

I send out my deepest sympathy to Richard, Heather and the rest of the family and we pray that God will comfort you during this difficult time.

We love you always our precious little

Danielle Maisie Anne Bougard

12 of July 2008 – 17 July 2009

Danielle

Danielle's little Hand

Little People in Cape Town……

The Excitement is sprouting….. we don’t have an official name but its safe to say that our Little People support group is official, we had our second get together on Saturday and although we are only  7 families we are positive that we are going to grow and grow.

Red Cross Children’s Hospital has given us their support by allowing us to use their facilities for our meetings, they have offered support in the form of Genetic counseling , occupational therapist the use of the play room and boardroom …. (and so much more )

Heather (Danielle’s mom) got in contact with Dr Fieggen of UCT division of human genetics (Dr Fieggen runs the genetic clinic at Red Cross and she is familiar with most of our little ones) and Dr Fieggen expressed how excited she was at our efforts and she has offered to make contact with any new or old parents on her database to inform them of the support group.

We had many areas to discuss at our meeting and we are about to get things going…. so there is lots of work ahead but its all good!!!!!!!!!!!! And im so excited to be part of this vision….

Here are some pictures or our little ones in Cape Town South Africa

(and what a active bunch they are!!!!)

Joel, Joshua and Martinque

Leah and Danielle

Martinque

Hamaz, Martinque and King Joel

Ashley giving Joshua a helping hand

Having fun!!!!

To all the POLP out there……

Its a new year, and for some of us its the same old, same old to others like us  POLP its time to gear as we take everyday as it comes ( as we always do!!!)

The past year has been really challenging for some of us, and we also spare a thought for the parents who’s precious little ones have passed away.

I  pray that this will be a year of proserity for us, and I pray that God will take us to new hights, its amazing to see how many blogs there are, im sure that we have made a positive impact on others and I know that the awarness will grow!!!!

So I leave you with some pictures of Leah seeing in  “2009” and yes ….she  stayed up till midnight the little party animal!!!