Last meeting

Well, a big thank you to everyone for attending our last meeting. We had a record attendance. A big thank you to the ladies from SARS for the talk. I think everyone got something out of it.

In summary:

Basically everything you spend money on which is related to the challenge/disability of your child can be used as a tax deduction. You need a letter from you doctor to prove that your child has a special need. Then whatever you claim for you need to be able to prove that the reason you bought it is because of your child's special need. For example, if your child is 6 years old and needs to wear nappies or has to drink a certain type of formula then you can claim for it. There was some discussion around whether, for example, you could claim for yoghurt if that is all your child can eat most of the time and the consensus is that you could have a problem proving that this is related to the child's special need.

So the rule is to claim for everything(medical and other) but within reason and bear in mind that you may be called on to prove it. You must keep all slips relating to any claims for at least 5 years.

You can also go back for the last 2 years(could be 3) and claim for things which you did not know about then. You just need to contact SARS and ask if you can be reassessed for those years.

How deductions work: let's say you earn R100 000 in a year and pay R20 000 tax. Your medical/other expenses for your child amount to R20 000. So then your tax calculation will be based on R100 000 less R20 000 ie R80 000. So (if the tax rate is 20%) your new tax amount payable should be R16 000. Therefore you will get a tax refund of R4000.

If you have any queries please contat me and I will put you in contact with Lindsay at SARS.

The other topic at the meeting was our proposed fund-raising initiative. Myself, Louise and Maxine (possibly Deonette?) are thinking of climbing Kilimanjaro in order to raise funds. Lou and Maxine need to raise funds to send their kids to SNAP which is extremely expensive. I thought I would raise money for the group as a whole. There was some debate over how good a method this was of raising funds as a whole lot of money needs to be spent first as it is not cheap to climb Kili. What do you think? Should we rather look at other ways of raising the funds? Any ideas on how to go about it? We are hoping to get some publicity through maybe Carte Blanche and thereby get sponsorship from some large companies for the actual climb. Are we smoking our socks? Do you think it is doable?

In order to raise money for the group I need to get as much information as possible from everyone about their kids. I need pictures and stories and I need to know what you need and why. Bear in mind that this is a selling exercise. We have to make the people want to give us their money. Please send me as much as you can preferably soonish.

Walkers

An interesting post over at Better than normal about the different types of walkers.

Also found a blog that links to CP blogs.

Meeting July 2008

Ok, I've not been very good with updating. Sorry about that. Our next meeting is tonight(3/7/2008) at my place at 7:30 and I have a lady from SARS coming to talk to us about taxes and what we can claim for. We are also discussing a fundraising idea.

Next meeting

Next meeting is at Glenda's place on Thursday 6 March at 7:30pm. Please pop me an email if you need directions.

Next meeting

Our next meeting is on 7 February at Sheila's house. If anyone wants to join us and needs directions please let me know via a comment. We are hoping to get as many people together as possible so that we can discuss plans for future meetings and outings.

I promise to update the blog more regularly this year. I wasn't really in the right space emotionally last year to do very much. Watch this space. Billy has some interesting insights on raising special needs children. Go and read her blog, you won't regret it.

Arts and Craft

Well done to the team of Cherub projects on creating such lovely beaded goods to sell. Two of the members of our support group got together and decided to get their kids working. Sandy does beading on clothes for a number of major fashion stores so it was only natural that Ryan (22 with cerebral palsy) and Storm (Glenda's daughter, 18 with Down's Syndrome) got involved and decided to make the most amazing beaded products. They also make very unusual gift boxes out of coke bottles by cutting them in a certain way and then decorating them using decoupage.

If anyone out there drinks a lot of coke, then please save your bottles and we will collect them from you. They must be the 2 litre plastic bottles and only coke - nothing else works.

On another note, the last 2 group meetings have been very interesting. Sorry for the delay in updates. In June we met at Sandy's house and Ian, father of a young man with cerebral palsy, gave us a very interesting talk on his experiences in the world of special needs children. We had an interesting debate on the merits of keeping your child at home with you vs putting them into a home. Basically the conclusion is that different things work for different people, depending on their circumstances. Lots more lively debates on a variety of topics.

July's meeting was at my house. We met a new member (hopefully) and ended up chatting till 1am, much to my husband's surprise when he arrived home out from an evening out expecting to find everyone gone and me asleep! It was a good meeting.

Next meeting and NRT therapy

Our next group meeting is on Thursday 14/6 at Sandy's house, including partners. Please see my latest mail or if you need details just drop me a line, my email link is in my profile.

Note from Sue about the NRT therapy:

We have found a venue for the seminar. It will be held at Bel Porto School 2 Arcadia Ave Landsdown at 10am on Saturday 14^th July. Please pass this message on as we feel the need to bring the awareness of this therapy to all who will benefit. The costs of the seminar is R200 per family (all this does is cover the costs of air fares). We will be holding the assessments and training at my home in Tokai. The assessments will be on the Saturday afternoon and possibly the Sunday morning and the training starts on Monday 16^th July to the Friday 20^th July. The training costs R3,600 for the week and consists of 2 hours a day. To those who are coming please let me know preferred times as soon as possible.

So look forward to hearing from you and meeting up.

Bless you all,

Much love,

Sue Webster

Please phone and chat if you have any queries.

O12-712-4955

0832636837

Celina and the NRT

Hi everybody
Just wanted to let you know what the NRT has done for Celina in just 3 Month.
She is far more alert and her back has straightened out amazingly. I attached a photo with he before and 3 month later so that you can see the wonderful change.
Now after another 1 1/2 month with the new exercises she starts making lots of sounds and is even more alert.
After only one month Celina's diaphragm was visibly working again and her breathing improved greatly. I can just say please consider this for your children. The next seminar will be on the 14. July 2007. Please let me now if you are interested and want to come. It is really worth it. This is the first and only therapy which has really shown big changes in short time in Celina.
I believe with God's help that Celina is going to walk and talk again this year.
Lots of Love and God bless you
Manuela

Scotson Technique Seminar

A new lease on life for brain damaged children

The 11 candles on the cake are lit and all eyes are on the little girl with blond hair, cornflower blue eyes and flawless skin as they start singing 'Happy Birthday' to her. Her response, as always, is to break into peals of delighted laughter.

The cake is just the accessory to the act; it’s the music that 11-year old Rebekah Ryan adores. That's because she can't see the cake and the music lifts her soul in a way her feet never will. Rebekah is severely physically and mentally brain damaged. She was born not breathing and two months premature. While frantic doctors successfully revived her, Rebekah's brain did not develop as it should. Today she is unable to walk, to sit unaided, to feed herself, to see and speak coherently. She has a curvature in her spine which is becoming more pronounced as she grows. Soon doctors will suggest the spine be straightened with a metal rod that will be put into her back in a painful operation she will not understand.

Yet Rebekah has not been consigned to an institution, left to dribble and degenerate in front of a meaningless TV screen. Instead her family has tried every therapy imaginable in a ceaseless effort to improve her life. However, aside from maintaining her health, these efforts have led to no obvious improvements in her physical or mental condition.

Until now.

Eight months ago Rebekah's caregivers flew to Johannesburg to try a new therapy they had been recommended. Known as The Scotson Technique (TST), it is a therapy for children and teens with brain injuries and disorders. It was developed and introduced in South Africa in 2005 by Linda Scotson, a UK national whose son was born with cerebral palsy.

The technique is a deeply restorative rehabilitation therapy that works on the weak respiratory system of a person with a brain injury or abnormality. Restoring the thoracic and abdominal respiratory muscles leads to an improvement in, among other things, blood supply, nutrition and nervous response to under-developed muscles and the connective tissues between the bones, and the electrical connection between the brain and the muscular skeletal system. Using this therapy, children of all ages are showing steady improvements in muscle, bone and cognitive development.

In Rebekah's case the improvements in 8 months have been remarkable: for the first time in 11 years she sleeps through the night; for the first time in 11 years she has regular and unassisted bowel movements. She is also trying to communicate and articulate sounds and there are signs of a relaxation in her hunched shoulders and an easing of the curvature of the spine. This is just the beginning. While the family is not daring to think about where this treatment could take them, they are allowing themselves to believe and hope that the improvements will continue.

For people with a natural spring in their step it is near impossible to understand the daily difficulties encountered by people with brain damage and those who care for them.

Rebekah's improvements are not unique. There are a number of other families – some in South Africa and others in the UK, that are seeing the changes in their children after implementing TST in their own homes.

Emily was four years old when introduced to the Scotson Technique. She is a quadraplegic spastic with partial vision. Unable to eat, she was fed by naso-gastric tube, she screamed constantly, suffered from acid reflux and was physically stiff.

After 6 months of her parents practicing the Scotson Technique on her she stopped having seizures, she came off all her medication and began to eat food orally. Her body began to relaxing and her vision improved. “The changes in Emily seem unbelievable,” said her parents in a therapy feedback session. “We are very happy.”

Linda Scotson, who has developed this technique in the UK, will be presenting a 2hour workshop on the therapy in Cape Town on the 24th of March from 10h00 to 12h30 at the Mountainview Baptist Church, Main Road, Lakeside. The workshop, which costs R200, will detail the origins of the therapy, how and why it works and how parents, grandparents and caregivers can be trained as therapists.

If families are interested, the workshop can be followed up with assessments and training.

Contact Sue Webster for info: 021 712 4955 / 083 263 6837, suewebster@icon.co.za.

Assessments will be held the afternoon of March 24 and require booking
Training – Monday March 27 to March 30 – costs R3600

Next Group Meeting

The next meeting will be on 8 March at 7:30pm at Sandy's place. Leave a comment with your email address if you need directions.

Family Day

We had a great family day at Camphills Village. I was hoping to post some pictures but since I upgraded to the 'fancy new blogger' I cannot post pictures! Go figure. Anyway, we met Louise and her family who have been wanting to meet us for ages.

Farewell little Meah

It is with great sadness that we have to say goodbye to little Meah who passed away on Saturday morning. We all send our sympathies and lots of love to Deidre and her family. The funeral is tomorrow morning at Our Lady help of Christians in Lansdowne at 10am tomorrow morning. Farewell little angel Meah, I am sure our Kendra has already welcomed you with open arms.

"I'll lend you for a little time a child of mine" He said
"For you to love the while she lives, and mourn for when she's dead.
It may be 6 or 7 years, or twenty-two or three,
But will you till I call her back, take care of her for Me:
She'll bring her charm to gladden you, and should her stay be brief,
You'll have her lovely memories as solace for your grief.

I cannot promise she will stay, since all from earth return.
But there are lessons taught down there, I want this child to learn.
I've looked the wide world over in my search for teachers true.
And from the throngs that crowd life's lanes, I have selected you.
Now will you give her all your love nor think the labour vain.
Nor hate Me when I come to call, to take her back again."

I fancied that I heard them say: "Dear Lord, Thy will be done.
For all the joy Thy child shall bring, the risk of grief we'll run.
We'll shelter her with tenderness, we'll love her while we may.
And for the happiness we've known, forever grateful stay:
But should the angels call for her much sooner than we planned,
We'll brave the bitter grief that comes and try to understand."

A verse by Edgar Guest (I used poetic license to change the gender of the child in the original verse).

NRT Therapy

I haven't been very good about posting on the blog lately, even forgetting about birthdays! Rap over the knuckles for me! I will do a catch up about birthdays and tea parties soon. But in the meantime I have been asked to put the following onto the blog. This is an email from Sheila and is self-explanatory:

Please would you place this information on the blog. Other mommies on the support group, please take note.

You have heard about Linda Scotson and NRT therapy from me before, after taking Ruan to Jhb for training/therapy. Linda will be in Cape Town for a seminar and assessments on 25 November 2006. She will be bring with her Patti, who is a locally trained therapist. Patti will be coming back to Cape Town on 7 December 2006 to offer training to new parents.

I would love all of you to at least attend the seminar and hear about the technique from Linda herself, since it is a wonderful concept and great successes have been achieved. The seminar is R200.00 and assessments are R250.00. The cost of the one week training still needs to be established. The Trust is prepared to sponsor anybody for the seminar, should money be an issue. (We surely understand these practicalities)

Please make a concerted effort to attend, since your child would benefit greatly, I believe. I am taking Ruan's nanny on the seminar, so that she can hear first hand what its all about, and then furthermore I hope to take her on the week's training course so that Ruan can get the full benefit of the treatment from a trained person who has the time to do it on a regular basis. I also feel that I perhaps didn't "sell" the whole thing to her in a way in which she could understand the importance of certain things, and hopefully, hearing from the professional, she would take it more seriously and do it as it should be done.

We will therefore start with Ruan all over, from the beginning, as if he's never received it before. Please don't take this to mean that it hasn't worked up to now - its just that I haven't had the time to administer the therapy properly and Raynette hasn't been trained properly. Ruan has excelled, even from the little bit he has received. The diet for one thing most definately made him stop vomiting and as soon as we take chances and don't watch his diet, he starts again. Although he doesn't vomit a lot, it almost as if he has very many "wet" burps when not following his diet properly. There are also a lot of other improvements, and I'm convinced that some, if not all, are accountable to the NRT therapy.

Sue Webster is organising the seminar and training. You can contact Sue direct on 083 263 6837 or 712 4955, or alternatively, speak to me and I will let Sue know the numbers.

IT REALLY IS WORTH AT LEAST GOING TO THE SEMINAR AND HEARING FIRST HAND WHAT THE CONCEPT IS ABOUT, HOW IT WORKS AND WHY. I WISH YOU COULD MEET LINDA'S SON, WHO'S A STRAPPING YOUNG MAN, AND RECEIVED THE THERAPY WHEN HE WAS ALREADY AN ADULT. SO EVEN OUR MOM'S OF ADULT BOYS AND GIRLS, JOIN IN THE DRIVE!!!!!! (I THINK HERE OF RYAN, MICHAEL AND SHELLEY)

Lots of love
Sheila

Welcome to the world

Congratulations to Tammy, Dave and big brother Connor on the birth of little Courtney on 08/08/2006. Blogger has been giving me problems, hence late posting. In these pics Courtney is almost 2 weeks old. She was a good sized baby and is doing well. For those who do not know, Connor has Mytochondrial Disorder which is why they belong to the K.I.D.S group. I will get Tammy and Dave to give us Connor's story in a separate post.

Group meeting - August

We had a very nice group meeting even though only 5 of us were there. I think the weather played a big role, it was raining cats and dogs. Well done to Tammy for making it even in her advanced state of pregnancy, Deonette with concussion and Marie and her mom for bringing JP out in the cold. We had a very casual meeting, looked at some photos, took some photos, chatted about all sorts. I even forgot to serve the cheesecake we were so busy chatting!

Now onto the VERY IMPORTANT NEWS. CONGRATULATIONS to Tammy and Dave and Connor on the birth of little Courtney on Tuesday 8 August. Luckily she waited till she was supposed to arrive (as per doctor's orders) and did not arrive during the group meeting! A very healthy 3.3kgs and so far so good. Ears have been tested and the right ear is perfect but the left one not as good but there may be fluid in the ear so nobody is too concerned and they will test again in 6 weeks. I cannot wait to see her! Hopefully I can publish a photo of Connor and Courtney soon.

Next group meeting

The next group meeting is at my house in Bloubergsands on Thursday 3 August 2006 at 7:30. I hope everyone can make it. We are expecting some new members too. Please leave comment if you want address details.

Next group meeting

The next group meeting is on 29 June at Glenda's house. Please contact me for the address if you wish to attend by sending me an email or leaving a comment with contact details.

Louise, if you read this, my emails to you keep getting returned to me so I have not been able to send you the details. Can you send me other contact details?

Anybody out there???

Hello...

Hellooooooo!

Is there anybody out there?? I am trying to find out who actually reads this blog and if it is reaching the target audience or am I doing this for nothing. It is aimed at the members of our special needs support group but I don't know how many actually read it. Also aimed at anyone who has a special needs child. Can I ask you to do something for me.

Can you please leave a comment and tell me who you are and why you read this blog.

Some suggestions on things to put into it would also be appreciated. I am dependant on you guys. Please send me some interesting stuff to post. I am still looking for photos and stories from our members so that we can get to know each other better.

Please keep the 20 May open as we plan on having a soup day with families. I will post details as soon as I have them.

Also please keep Tammy and family in your thoughts as Connor is back in hospital with a lung infection.

Happy Birthday Ryan

Ryan is 21 today! Congratulations Ryan. I hope you had a super day. Just a little bit of history on Ryan. When Ryan was born 21 years ago with cerebral palsy his mother was told that he would be a vegetable and that he should be put into a home. But she did not accept that. Thanks to the hard work and dedication by Ryan's family, look at him now. He is a wheelchair karate champion, he helps his mother with her beadwork business and has a lot of friends. He is well known locally where he often goes for 'walks' with his helper. Hopefully Sandy can send us a more comprehensive story about the last 21 years to put onto the blog.

HAPPY BIRTHDAY!!!!!!!!!!!!!!!

Heaven's Special Child

A meeting was held quite far from Earth
"It's time again for another birth"
Said the Angels to the Lord above
"This special child will need much love"

His progress may seem very slow,
Accomplishments he may not show;
And he'll require extra care
From the folks he meets down there,

He may not run or laugh or play;
His thoughts may seem quite far away,
In many ways he won't adapt
And he'll be known as "handicapped".

So let's be careful where he's sent,
We want his life to be content.
Please Lord find the parents who
Will do a special job for you.

They will not realise right away
The leading role they're asked to play.
But with this child sent from above
Comes stronger faith and richer love,

And soon they'll know the privilege given
In caring for this gift from Heaven.
Their precious child so meek and mild
Is Heaven's very special child.