P O Box 10213 • Ashwood • 3605

Telephone: +27 (0)31 700 3956 • Facsimile: +27 (0)866 153 913

Email: info@kzncerebralpalsy.co.za • Website: www.kzncerebralpalsy.org.za

Our Association is a registered Non-Profit (002-154 NPO) and Public Benefit Organisation (PBO 930000042) with

Section 18A Tax Exemption status.

“Congratulations to the KZN-CPA team with

Newsletter 42.

It was a stunning edition full of

interesting news!”

Thank you to an unbelievable team of Donors,

Executive Members, Staff and Volunteers, as well

as to André and Mel at Attic Rush, for their

professional work. We have great pleasure

introducing the Association’s new logo:

Your newsletter

The previous newsletter (No. 42) achieved an

overwhelming response from many readers.

Thank you for your contributions and feedback.

Skallagrigg goes all over the world to share our

news. Remember, you can also read it on our new

website www.kzncerebralpalsy.org.za

Have your say…

After 20 years we have decided to find a new

name for our newsletter. We have a new logo and

a new website, so let’s do it…

YOU are invited to participate in this quest! Send

as many suggestions either by fax, email or sms to

0711331329. Remember to include your

suggested title for your newsletter as well as your

name and telephone number. No restrictions on

the number of times you enter, closing date is

12h00 on 21st August 2012.

The new name will be chosen at the AGM by

majority vote and the winner will be announced

(you DO NOT have to be present). Besides

bragging rights, the winner will walk away with a

sponsored HELICOPTER ride for two

people in Durban.

THANK YOU to Carol Sobey of JNC Helicopters

who sponsored this prize. The winner can take a

friend or if you wish, you can nominate two

people of your choice.

Get those suggestions to us now

and earn your wings!

Wendy

Wendy is a longstanding

member of the Association

and mother of Helen, a

Cerebral Palsied person

in her 20’s.

17 August

Kilimanjaro Fundraiser See insert for details

21 August Annual General Meeting

At our offices at 17H00

1 September Browns’ School Fete

Not to be missed!

4 September World Cerebral Palsy Day

www.worldcpday.org

4 September Secretary’s Day

Contact us to help spoil your Secretary

22 September Pevensey Place Fete

Join our Residents in the Midlands!

S K A L L A G R I G G

In this 43rd issue of your newsletter

Diary of a CP 20-something

Thank you from Lulu

Pevensey Place (continued…)

Thank you from Reunion School

Our new logo

Perseverance is not a long race; it is many short races one after another.

- Walter Elliott -

Thank you and goodbye from Lulu and Mpilo

To me she was just another pregnant mom that I had to care for, but something in me wanted to know more about her, and she was willing to let me in on her life. Before I knew it she had given me a contact number for a possible school for my child. “We do not necessarily cater for Autistic children”, she said, “But call the manager, explain your situation, maybe you will be lucky and get a place for your son”. To my surprise, the manager, Paula van Eeden, wanted to see me in person.

To me, she was just another

pregnant mom that I had to care for, but something in me wanted to know more about her, and she was willing to let me in on her life. Before I knew it, she had given me a contact number for a possible school for my child. “We do not necessarily cater for Autistic children”, she said, “But call the manager, explain your situation, maybe you will be lucky and get a place for your son”. To my surprise, the manager, Paula van Eeden, wanted to see me in person.

Mpilo started at C.W.A.C. (Children With A Challenge) but his behaviour soon became a challenge for the safety of his fellow students, and one day Paula wrote a very convincing note on why he needed to be seen by a doctor and possibly be on medication for his hyperactivity. Everyone at home joked so much about that note, “Mpilo is so fast that it is impossible for the Care-givers to get to him before he unlocks the wheelchair and wheels the other kids away” wrote Paula.

We went for assessments again, and these were very taxing on us as parents. Different professionals told us a few difficult things about Mpilo and when it was time to go to a paediatrician I knew I needed a doctor who would not just put my son on medication, but understand and appreciate Mpilo, the way I did. After shopping around for a doctor I found Dr Mbaiwa who told me my son was not just another autistic boy but a capable little boy. Still, I was not convinced that medication was the solution, I was depressed but I knew that in order to keep my son at school I had to do this.

You must be wondering why I felt this way, as a nurse, I should have known better. Trust me, I was not a nurse in this situation, but Mpilo’s mother and my fears, no matter how unfounded were very real to me. I guess this is the second thing that I must express my gratitude for. With medication, Mpilo’s behaviour improved, and guess who was telling me to hang in there until we can find a suitable dose for him… you guessed right, it was Paula.

I had now found a comfortable place for my son and I. Even medication was no longer an issue for us. Mpilo now reminded me that it was time for either his morning or afternoon dose by bringing it to me. Then Paula said to me, “you know Lulu, Mpilo is such a clever boy and I worry that he is under stimulated here”. I thought to myself, “Can’t she see that I am happy and so is my son”. As if they were ganging up on me, Dr Mbaiwa started the same conversation each time we went to see him. He suggested I approach St Raphael’s School.

The day for the interview at St Raphael’s came and although I would have loved to pass the buck on to someone else, as parents, we had to take him. I was tense, but at the same time I realized just how much my son had improved since starting at your centre, and I have each and every member of CWAC and CREST to thank for him making it in that interview.

Thank you… To Donors: Thank you for supporting this organisation. Thank you for your commitment and ongoing contributions.

To Paula: For always believing in my son and encouraging me to push him. Our children will always be in a great

place with you around. Humility is your middle name.

To the Care-givers: For always noticing the smallest things and achievements from my son and letting me know about it. Through all of you I have learnt so much about my son. You ladies are so amazing and you will one day be abundantly blessed for taking such good care of our special children.

To the Admin staff: It was through one of you, Pamella, that my son found his second home and family. Thank you for the friendly smiles you always share when we drop off and pick up the kids.

To the Drivers: For putting up with my ‘African time concept’. Thanks to you, I now do not battle with Mpilo putting on a seatbelt when we are travelling. Actually, he is the one that wants everyone in the car to put on their seatbelts.

To Mpilo’s fellow students: Thank you for showing my son that being different

in any way does not make one any less special.

We have an exciting and yet scary journey ahead of us. Through lessons learnt I can say I will give it my best.

Keep up the good work, stay blessed.

We surely shall miss you and promise to visit you.

From Lulu, Mpilo and family.

“I will never forget a normal day a few years ago in Pinetown clinic when one of your staff members walked into my consulting room…”

“He is a wise man who does not grieve for the things which he has not, but rejoices for those which he has” - Epictetus -

Diary of a Cerebral Palsied twenty-something Diary No. 40 by Penny de Vries

When the new KZN Cerebral Palsy website was launched a few weeks ago, Julia and I had a bit of fun re-reading old diary posts (they are so much easier to access now). Some of her comments when she was the tender age of 9 were so perceptive. Today she said to me, “Sorry mom, I don’t seem to come up with pearls of wisdom anymore!” If that is true then maybe it’s because of the life stage she is in right now. She is now 25 years old and further up the Tree of Life she mentioned when she was 9. Branching out into the world of work is proving more difficult though.

It is interesting that this is the one question people invariably ask me when we meet up, “How is Julia? Does she have a job yet?” Many of them also give me the impression that I should be doing more about it. In my view, Julia, at the age of 25, is the one who needs to get herself a job while my role is to facilitate and

support. The reality is that this is difficult for her, for many reasons.

One of the reasons is that to apply for work, day in and day out (which is what she used to do) and to be faced with constant rejection is demoralising. Having just come out of a severe depression, it is also important that she avoids too much negativity. The other reason is that working a full day is physically extremely taxing for her, and something she may never be able to sustain. Ideally, she needs a part-time job or, even better, more public speaking engagements. She loves public speaking; well, she just loves talking full stop whether to one person or one hundred.

The important thing about working is that it does enhance one’s self-esteem and this is probably why interested people enquire so much about this aspect of her life. Interaction with others is also

important; Julia and many of her same-age peers have difficulties in finding an appropriate social scene but at least those who have jobs also have more exposure.

Julia and I have discussed this and she believes that as an interim step, she should do some courses that will keep her mind stimulated. I think this is a great idea and maybe I can then look forward to more pearls of wisdom.

A place called Pevensey (continued…) by Bev Neadley

Circumstances changed and decisions had to be made – when my younger daughter Loren moved to the United States and got married we thought of relocating.

However, the idea of disrupting Bronwen’s life was inconceivable. Then two and a half years ago we found out we were going to be grandparents and the decision became more serious. How could I be on another continent when my grandchild is born???

We discussed our thoughts with Bronwen and being the adventurous person she is, she was very keen to come with us. This was a big relief

because I could not imagine leaving her behind.

After much soul-searching we decided to take the opportunity of Residency in the United States.

Needless to say the departure from Pevensey was very traumatic for us all!!!

We have been living in Florida for the past eighteen months and Bronwen is living at home – we have come to accept that there will never be another PEVENSEY PLACE.

We have endured the challenges and adjusted to the changes and Bronwen is so enjoying being a part of our family on a daily basis. Her relationship with her little nephew is so wonderful to see... he absolutely adores her.

Being the extrovert that she is, she wasted no time in making sure I found her a place to go to in the day and she is making many friends and takes part in every activity they have to offer. She has been elected to the committee for Advocacy for the Disabled and was elected “Consumer” of the month this month! So I believe that although Bronwen will never forget her special family back in Underberg she is well on her way to creating the next chapters of her life with an enthusiasm and faith that is remarkable!!

Huge changes have taken place in Bronwen’s life…

This article continues from the previous newsletter, if you have missed it, contact us for a copy or read it online at

www.kzncerebralpalsy.org.za

“Blessed are those that can give without remembering and receive without forgetting”

- Author Unknown -

Thank you to all our Donors for 18 years of success at our Reunion School

Thanks to the support of you, our donors, our Reunion School for Cerebral Palsied learners is embarking on a huge new building project.

This school is the only school of its kind in the world where Cerebral Palsied children receive their education, therapy and skills training in their mother tongue – Zulu; as well as in English.

Our history…

1992

The need to expand our educational services was recognized and the Association successfully negotiated control of an unused school in Reunion.

1993

We prepared for the opening of the School and the most exciting date was 11th April 1994 when the Reunion School opened its doors for Cerebral Palsied pupils.

It became apparent that pupils would have to be accommodated on the premises as the waiting list had pupils not only from Durban, but from the entire KwaZulu-Natal region. The proximity of this site places it in an ideal position to cater for many Cerebral Palsied pupils who’s educational and therapy needs would otherwise remain unmet.

A physiotherapist was appointed who operated from a small room. This room also had to be shared with the Cook and a stove from which the

children’s food was prepared.

1995

A Speech Therapist and an Occupational Therapist were appointed.

1997

A fully equipped Therapy Centre was built. Our Therapy Centres group room is also utilised to train students from The Westville University and from Prince Mshiyeni Hospital.

2003–2004

Eight state-of-the-art, fully equipped and furnished classrooms, an extra 66-bed fully equipped hostel, a new and bigger dining hall and a brand new kitchen were added.

2005

A new dining hall was built. It was decided to keep the old dining room intact and to change it into a skills and life training kitchen.

Girls with severe Cerebral Palsy, who are mainly in wheelchairs, can now receive home economics training to equip them to become self sufficient and further enable them in their role as mothers in later life or in the workplace.

2006

A brand new computer centre was opened at our school.

2008

Wheelchair-friendly playground ….. equipment was installed and a bus was donated to the school. The school also started its own vegetable

garden.

A huge development took place to install storm water drains and new pipes to fix the water problems experienced.

2010

Awnings were erected for visitor’s vehicles, security fencing and tarring of the washing lines area were completed, and the entire school was repainted.

2011

The School started an Autistic unit, which is currently running from three donated wooden huts.

2012

This year is seeing us into a new development at the School. Currently we have 162 learners. The plan is to build:

A brand new section catering specifically for Autistic learners;

A further 66-bed hostel;

A new wing of senior classrooms to enable existing academic class-rooms to no longer be shared, but to be fully utilized for skills development.

This will enable us to accommodate more Cerebral Palsied children.

Interested people who would like to learn more about this project, please contact Ina on 031-7003956 or ina@kzncerebralpalsy.co.za