Kindness Inspired Dedicated Support

AAC Talk

2011-08-22T10:23:00.000+02:00

We had a fabulous talk on Saturday by Liezl about AAC - Augmented and alternate communication. Liezl discussed the various forms of communication with our special non-communicative children stressing the point that each child is different and the requirements for communication will differ greatly depending on each child's needs. We had a great attendance - about 28 in total with 6 being from our group and the rest being a mixture of parents and teachers/therapists from various schools. I hope everyone found the talk informative and helpful. I will post a few photos later on today. If anyone would like to get any more information on this subject please leave a comment on this post. A big thanks to Sheila for organising the venue and to all those who brought eats.

As you can see I have been very slack at updating this blog but would like to get it up and going again. If any of you have any ideas for topics or would like to do some updates yourself please let me know. Our next meeting is scheduled for 8 September, venue still to be decided.

Next support group meeting

2010-08-10T12:44:00.001+02:00

The next support group meeting is on Thursday 19 August at Sandy's house. Please leave a comment with contact details if you need the address. We will be having a guest from Iris House which is a hospice for children with life-limiting/life-threatening illnesses. Sue will be chatting to us about caregivers and the training of caregivers specifically around dealing with disabilities. We are also hoping to have some researchers with us (but it has not been confirmed yet). They are doing research on the provision of services to disabled people in the Western Cape, which I know is a matter very close to many in the group's hearts.

Last meeting

2008-07-13T15:08:00.002+02:00

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

2008-07-13T15:00:00.002+02:00

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

2008-07-03T08:10:00.002+02:00

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

2008-03-03T08:02:00.001+02:00

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

2008-01-31T10:22:00.000+02:00

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

2007-07-23T09:34:00.001+02:00

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

2007-06-12T09:12:00.000+02:00

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

2007-06-08T02:20:00.000+02:00

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

2007-03-16T06:54:00.000+02:00

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

2007-03-01T10:38:00.000+02:00

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

2007-02-23T07:27:00.000+02:00

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

2007-01-22T22:03:00.000+02:00

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

2006-10-24T08:53:00.000+02:00

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

2006-08-24T23:12:00.000+02:00

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

2006-08-13T23:18:00.000+02:00

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

2006-08-01T12:55:00.000+02:00

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

2006-06-21T22:56:00.000+02:00

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???

2006-05-04T10:28:00.000+02:00

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

2006-04-25T21:43:00.000+02:00

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

2006-04-12T22:54:00.000+02:00

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.

The Ruan Belcher & Other Near Drowning Survivors Rehabilitation & Educational Trust

2006-04-11T07:53:00.000+02:00

Trust No. : IT3848/2004
5 Madison Square, Edgemead, Cape Town, South Africa, 7441
Telephone : +27 21 558 9871(a/h) e-MAIL : sheila@telkomsa.net

Our banking details are :
First National Bank
Account No. : 62078343391
Branch Code : 20-14-09
Shortened name : NDST

Dear Friend

This Trust was established following Ruan’s survival after a drowning accident, which left him severely brain injured. We then became aware of the many things that were lacking and felt a need to remedy the situation.

There is no help unless you go and find out for yourself. This is difficult considering the emotional turmoil you find yourself in at the time. We want to avoid this for others who may find themselves in the same situation, and sad as the thought may be, there will be others.

We kindly ask you to assist us to raise funds by doing the following:

1. Make ten copies of this letter
2. Host a tea party for ten guests and give them each a copy of the letter and ask them to make ten copies.
3. Each guest donates R10.00 for the party (if they want to give any more, please don’t argue!!!)
4. You bank the R100.00 into the Trust Account (details below)
5. You may charge more if you need to cover your costs.
6. You encourage each of your guests to host the same party with their own ten guests.
7. They in turn encourage their ten guests to host a party at R10.00 a head…………..
8. We all have fun and the Trust Account grows
9. We are able to do all the wonderful things the Trust was established to do.
10. You have started a wonderful epidemic.
11. Should all the guests at the various tea parties participate fully, we could raise over R1 million at just five levels. And there’s no reason to stop there…………….

The funds raised would be used to carry out the following vital tasks:

1. We need to build a network of information.
2. We need to lobby doctors and government with regard to rehabilitation possibilities
3. We need to bring the up-to-date methods of rehabilitation to Africa.
4. We need to make people aware of the dangers of water with little ones around.
5. We need to build a school-cum rehabilitation center for these children.
6. We need to consider the family as a whole and assist each one in the household.
7. We need to consider assisting working moms and single parents.
8. We need to train carers.
9. We need to establish a system of respite for parents and siblings.
10. We need to do many other things, and with God’s help, and yours we CAN MOVE MOUNTAINS.
Thank you and God bless
Sheila

For more details on Ruan and the trust go to the following link

I am the child

2006-04-11T07:51:00.000+02:00

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of. I see that as well. I am aware of much....whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself; I do not give you understanding as you know it.
What I give you is so much more valuable... I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.
I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, you healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.
I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick. What I do know is infinite joy in simple things. I am not burdened as you are with strife and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.
I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.
Author unknown

To You, My Sisters

2006-04-11T07:48:00.000+02:00

To You, My Sisters
© Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children ungergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

April meeting

2006-04-07T14:20:00.000+02:00

We had our April meeting last night at Sheila's house. It was almost a full house, I think the biggest attendance since I started. It was arranged at slight short notice therefore I was not able to put a notice on the blog for it, however since the attendance was so good it appears that a notice is unnecessary.

My apologies for not updating the blog for so long. For anyone who does not know, if you go to Kendra's World you will see why.

A few things were decided at last night's meeting.
1. Every month each member will contribute R10 towards a petty cash fund which can be used for group outings or something like that.

2. As next month is the anniversary month of the group it was decided to have a family get together. It will be a soup lunch and will be on the 13 May so reserve the date. We will again combine with another support group and the details will be posted closer to the date.

3. We decided that we should formalise the group a bit and arrange a speaker now and again although most are happy with the current format where we all get together and just catch up what has happened in the last month. We appointed Deonette as Chairlady, myself as secretary and Tammy as Treasurer. Fine secretary I am as I cannot remember if there were any other 'appointments'. Next time I will take notes.

Watch this space for more interesting topics.

Next meeting

2006-03-12T23:01:00.000+02:00

The meeting last week went well. Unfortunately only 5 of us could make it. Next month's meeting was supposed to be on 13 April but we did not think it will be well attended considering it is the Thursday before Easter weekend. We were considering moving it to Tuesday 11 April. Let us know what you think. Sheila will be giving us a talk on the therapy she has been using on her son so I think it will be well worth attending. If anybody has any ideas on topics to discuss at future meetings please let us know.

At February's meeting we decided to have our May meeting at Guzzlers in Flamingo Square to celebrate the first anniversary of the group.

Epilepsy - a drug free solution

2006-03-12T22:51:00.000+02:00

Another interesting e-mail received. The following is an article mailed to Sheila.
The link is on the title. The site linked to appears to be under construction still but I was able to find some interesting stuff related to ADD etc.

Epilepsy and Biofeedback.

There's a relatively new kid on the block of epilepsy. EEG biofeedback (neurofeedback) training of raising SMR and lowering Theta has long been proven to be very effective in removing all symptoms of all types of epilepsy. HemoEncephaloGraph (HEG) that works with EEG to make this training even more effective and faster.
The very effective EEG biofeedback uses the Sterman protocol, and it's used in the biofeedback units leased by BHT. Dr Von Hilsheimer, one of the pioneers of this brain training, is now using this protocol exclusively in his practice. He has even stated that anyone who doesn't use it is guilty of malpractice. It is the best method found today, and by leasing the biofeedback unit, it can be afforded by mid income families, and done at home.

Despite what some clinicians say about "the dangers of non-trained people doing this", it's actually quite simple to learn and use. There is NO DANGER AT ALL. There are no cases where any real harm has ever been done with biofeedback. The clinicians have a vested interest in believing this nonsense (50-150 a 1/2 hour session). For much more info on all this and HEG biofeedback check Click Here

HEG biofeedback (Neurofeedback) is relatively new, and Dr Hershel Toomim has done extensive research on it's use with epilepsy and ADD/ADHD types. Others have found that using HEG biofeedback first, and then doing the Sterman method can shorten overall brain training for all forms of mental problems.

Some Orthomolecular Tips on Epilepsy That May Help

In my previous orthomolecular practice, I used L-Taurine in combination with zinc, and that helped many epileptics remain free of seizures. The dosages can be as high as needed of L-Taurine as it is just an amino acid (protein), and cannot be "overdosed" (can you overdose on beef? - maybe). Amounts of 3000 per day and even higher have been used, although the usual starting point is 1000 or so. The zinc is usually in doses of 15-30 mg per day.
In addition, some epilepsy has been traced to mineral toxicity - mostly mercury. A hair analysis may confirm that this is at least part of the problem. Research lately has pointed to the dangers of the vaccinations given to babies that actually contain mercury. This has apparently caused both autism and epilepsy as well as ADD/ADHD.

Some others have found help in giving large B-complex along with additional B6 and magnesium. Also give additional calcium to balance the magnesium to some extent.

Others have found digestive enzymes useful in this as well.

Allergy/sensitivity testing has also helped many. For a free way to do basic testing see Allergy Testing

The first time I went into the site I got somewhere but since then it just comes up with a page saying 'Catch you later'. Maybe you will have better luck.

Talk tools

2006-03-12T22:39:00.000+02:00

Some interesting info received from Sheila the other day. Sara Rosenfield-Johnson was in SA recently for a seminar. See link (click on title) for her website. See mail below from Elna Rudman.

Are any of you familiar with this? If and when Sara comes to SA again, would any of you be interested in attending her seminar? Feel free to contact the writer of this email for more information at :
Manuela Aspeling
E-mail Address(es):
caspeling@oldmutualpfa.com

rgds
Elna

Hallo Elna,
we didn't have a computer for 2 weeks, but now I am able to write again.
Just wanted to let you know that the Talk Tools seminar was absolutely phenomenal. I am convinced that you could get Roald off the feeding tube and he could eat normal again with Sara Rosenfield-Johnson's method. After this seminar I knew once again that our children didn't get the attention and help they could have
gotten much earlier and so many things could have been prevented. We are trying to get Sara again over next year.
Unfortunately she is booked out till next year February and then we need to get quite some speech therapists and parents together to attend the seminars so that the costs can be covert.
Our speech therapist is also very impressed. After working for two weeks with Celina she made really good progress, the lips are slowly coming together und are showing far more movement as well as the jaws. Her eating and drinking have also improved.
It is just amazing. Sara's methods and the way she is working with the children in a fun way are just absolutely great. She is a very humble women. On the side she is doing charity so that poor people can get her tools as well. I had 2 stunning seminar days and can only recommend it to everybody who got a child with feeding or speech problems.
Please feel free to send this E-mail to others.
Love
Manuela

Another e-mail to Sheila from Manuela:
Thanks for your interest. For more info check www.talktools.net. You will find different articles from Sara and you can have a look at the tools she is working with.
Re Traders is the company in Johannesburg which is selling the stuff. Speak to Dee-Ann Panzera.
Dee-Ann Panzera – Operations Manager

R E Traders and Therapy Tools

Tel : +27 (11) 705 1281 / 465 6219

Fax: +27 (11) 705 1281

Mobile: +27 (82) 413 1535

They also have a catalogue and are always very quick to send them out to people who are interested. They will have a list of speech therapists who did the seminar in February and will start working with the Talk Tools therapy. I meet with Dee-Ann this weekend in Cape Town and will speak to her to help to connect you or your speech therapist with a speech therapist who was at the seminar. If you got more questions feel free to contact me and also to forward this e-mail to others.

God bless you

Manuela( Mother of Celina, 4 year old near drowning survivor with brain injury)

Sheila has suggested that if there is enough people interested we could perhaps hire a bus or something to get to this and other seminars as a group. I am thinking that maybe we could organise a sponsorship but I don't know that much about organising that kind of thing.

Next meeting

2006-03-06T21:37:00.000+02:00

Our next meeting is on Thursday 9 March at Vannessa's house. If there is anyone who wishes to attend this meeting who has not yet received the address please leave a comment for me or send me an email. I hope to get more posts from group members soon.

Books to read

2006-02-16T09:21:00.000+02:00

Some interesting books to read:
"Beyond the Veil" by Pauline Grogan
"What to do with you Brain Injured Child" by Glenn Doman and Keith Pennock's book on the same subject
"Doran" and "The Other Child" both by Linda Scotson.

If anyone has any other good books for us to read relating to having a special needs child, please send them to me. I am also going to try and set up a database of schools in the Western Cape which cater for our special children. There does not seem to be 1 central place where a person can get this kind of information. There are also apparently places where your child can go for a weekend to give Mom and Dad a bit of a break which cater specifically for special needs children. These are all things which the special needs community should be able to find quite easily and I aim to set up a separate website for this. Any other ideas on things which would be useful to have online please let me know.

KIDS

2006-02-14T22:37:00.000+02:00

Welcome to KIDS also known as the Special Needs Support Group of Tableview. This blog is going to provide a forum where the parents in the group can air their views, share information, share special moments of joy or sadness and generally communicate with each other. Each person in the group will be able to send a post directly to the blog or can ask me to put one in for them. It is up to the individual as to how much or how little you wish to share with the world.