Without sufficient funding and a more coherent approach, the future of children with special needs is bleak according to Speech-Language Pathologist (SLP) and Audiologist and founder of Ambrose Academy, Kutlwelo Mariri.
She was one of the eighteen young leaders from Botswana who flew out to the US recently to participate in the Mandela Washington Fellowship, the flagship programme of the Young African Leaders Initiative (YALI). Here she discusses her experience and what she has learnt through the programme.
Why did you apply for Mandela Washington Fellowship (MWF) Program 2018?
As a person you need professional and development growth so this was opportunity for me to go and appreciate how far I have contributed with the field of Speech-Language Pathology and Audiology in my country, to learn about the business acumen of making services sustainable and to see what’s next. So since I heard how rich the Business and Entrepreneur track was I believed I should apply and I really got more than what I ever bargained for. It was an experience I wouldn’t trade for anything.
What does it takes to be Mandela Washington Fellow?
It takes a person who has the willingness to change the status quo as well as to care about improving the lives of people. In a nutshell you should be a visionary. I think for last year there was about 37 000 applications and total selection been 700 in Africa as a whole. We were only 18 from Botswana and I was privileged to be part of the Botswana MWF 2018.
What did it mean for you to be selected?
You know Rachel, God’s timing is always the best and we never understand it. I have been meaning to apply but our organisation was not ready for me to go away for 7 weeks so this time I applied and was selected this was perfect timing for me as well as our organisation. For example from the professional side of things we needed to re -evaluate our journey and reposition ourselves to continue being of value to the patients and to special needs children as well as introducing PREVENTION IS BETTER THAN CURE. One of our major concerns is that many children are delayed in speech and language, in fine and gross motor skills simply because of lack of stimulation if we do not attend to this, the number of special needs kids will continue to rise. So as Ambrose Academy we need to address this issue like yesterday otherwise we are sitting on a time bomb.
Where were you placed?
I was placed in a very intensive programme for 7 weeks in University of Austin, Texas under the programme of leadership headed by Professor John Dogget. From the very first day, he told us his intent was not to make us into himself, rather to make sure we graduate from the programme as people who will go and make a difference in our countries and make Africa what it needs to be. He has deep care for Africa and I feel like I owe it to him to make sure whatever I have learnt I better myself and my people. The course covered main areas of leadership, business, critical thinking, self care and this year’s Mandela Theme of Servant Leadership.
So how do the following areas apply in your profession;
Leadership-As you know the profession of Speech-Language Pathology and Audiology is relatively a new profession in our country we still have a long way to go. However what came from the MWF 2018 was that do it in phases, appreciate where you are, where you need to go and keep pivoting until you get at your destiny. Be willing to get advice and be eager to learn so that you keep up with latest trends in your field and NEVER compromising QUALITY.
Also care about humanity and the people you serve as much as acknowledging that some will NEVER be happy with your services no matter how much you try but make peace with that. This really resonated with me very well I always see possibilities with my adult patients and special needs children however one thing that used to hurt me is seeing a parent with buying power not affording their child that opportunity and always complaining about this and that no matter how much I tried.
Business Acumen-Please allow me to generalise in Botswana , there is perception that Health should be FREE even in private sector while its OKAY to pay it in South Africa for example and that has robbed us from having research institutes because research is expensive. In most cases I struggled so much with my patients wanting discount of everything which then makes it impossible to pay monthly expenditure like the rentals and salaries of the personnel. So I heard in all the 7 weeks that passion alone won’t pay bills every day. Prof Doggett made sure we get that. He summarised it like government, private sector even Non Government Organaisations need funds to run. So it doesn’t matter what for, whether for rehabilitation to improve, we need funds to make it first class like in other countries. So sustainability comes in here; if one can’t pay for running cost then they simply face closure.
Self care-Everyone who is in business will attest that as a founder or pioneer of any project you work non-stop with absolutely no time to smell the coffee. This really puts one at risk for cardio vascular diseases and burn out as all they do is work, work and work. However I have learnt to appreciate that one needs to take care of oneself before taking care of other people. All I have been doing is work, work and work. I used to love baking and for the past 7 years I never did it so at least now I have started to learn again, hehehe maybe this festive season I will bake for my family …..
Servant Leadership-I believe as Africans we have the custom for servant leadership it comes natural to us to care about each other even those in the community however we have diluted this if not lost it.
That is why we have concept such as Kgomo ya Mafisa or every child is yours …… Every child is yours really hit me home when my team and I saw the need to establish a trust that can raise awareness about special needs children or teach the public about rehabilitation it was a way of giving back…..there is so much stigma but the question what do we do about it? Do we advocate for these kids or we turn a blind eye we concluded that we needed to advocate so that whether in government, private sector or NGOs our people can be helped. But our many challenges are that there is no volunteerism anymore, we only care once it hits home and by that time there is nothing much you can do because now when you advocate you fear people will say Oh you are only doing it now because you are going through it even though I personally believe it’s never too late to start.
You touched on the general expectation by most people for free medical/specialist services and you raised valid points. But, what of special needs children coming from underprivileged backgrounds? Are we saying they are doomed because their parents can’t afford specialist services at Ambrose Academy for example?
Oh my God Rachel, this is one area that hurts me the most, it’s just that my hands are tied. You know we are very far from assisting these children. I always say if we the literate ones, with buying power and with so much exposure; we don’t see the value of investing in our children ‘s rehabilitation services or prevention is better than cure programmes what is the possibility of having these services extended to those in deep rural areas? Because once we get it then we will extend it to them and fundraise for them? Until then I don’t know what will happen, we need brave people to stand up and help this situation especially policy makers.
Why can’t you at Ambrose Academy for example extend these services to these children especially that I always hear parents particularly those with autistic children talk about the great improvements they notice in the children once they start at school?
Well we have always asked to be subsidised and the answer we get is that it’s not in the government policy. However NORMAL developing children can be sponsored in private institutions and that’s OKAY BUT FOR CHILDREN WITH SPECIAL NEEDS WE would rather give them P300 MONTHLY. I mean if we don’t do anything now can we ever sponsor them in universities while they are not rehabilitated? No ways. I have asked government since it used to sponsor these children in South Africa, why can’t the sponsorship be extended to services like ours? All the international visitors are saying why government is not assisting your efforts? Who is government Rachel? It’s the people working in government. What they do is to find 100 reasons why they can’t sponsor children in our school even though they can see with their own eyes how we have improved the lives of these children.
The only thing to do I guess is to continue advocating for all these children until Policy Makers hear us, and realise that only talking about how we want to improve special needs children lives it will NEVER happen unless we make it possible for them through enabling policies and implementation not just talk.
Share some of outstanding moments of your time in the US
One of the aha!moments I had was during an assignment I had to write my obituary and read it to the audience. It was so intense and very emotional to a point where Prof John kept saying remember guys you are not dead but we couldn’t help crying because it included how you have empowered your family and how your people will remember you by the sacrifice you made for your country. Did you assist your patients and the children in Ambrose Academy simply because it’s the right thing to do or you sabotaged people you were serving? One thing I really wish for my country is for us to create opportunities for others, I normally say if you go to most organisations for assistance the norm in Botswana is that they will tell you 100 things why it can’t work instead of 100 ways to make it work. However in USA they are willing to solve problems for the benefit of others. Imagine if we had that attitude in Botswana.
The whole experience was eye opening and I will like to encourage all young people to apply for it so that they can go and learn from those who are ahead of us. We need to see the possibilities so that our dream for our country becomes even more brighter and we can indeed tell our African stories instead of others telling them for us.
Is there anything we can learn from the healthcare system of the US?
Health is expensive! I think this is the first step we need to appreciate in Botswana, running away from this breaks my heart. Investing in experts, resources and research is costly; do we have health research units? That’s the only way we can improve our health system. We do not need to re-invent the wheel it’s already invented by those who are ahead of us. All we need to do is work towards that. Nowadays when people are hospitalised I hear them saying I know I am going to die, hospitals should save lives not become places of NO HOPE. We need to change that.
What does the future hold for you personally and Ambrose Academy?
The future is exciting MWF2018 has increased my network where I can learn from others and continue to improve myself. I was kind of losing hope with all the efforts that I have tried but now I have been ignited. As Ambrose Academy we will continue to raise the bar and ensure we remain relevant to bring value to Ambrose Academy children, even all other children in this country. We will soldier on and leave no stone unturned until our voice is heard…… GIVE CHILDREN WITH SPECIAL NEEDS AN OPPORTUNITY THEY ALSO DESERVE TO HAVE A BRIGHT FUTURE THEY ARE NOT DOOMED …..
‘Cancer took away my boobs, not my life’
Sun Health: What events led up to your diagnosis, or, how did you discover that you were suffering from cancer?
Mpho Kgaodi:My journey with Breast cancer started in 2012. Around April I felt a lump on my right breast. It was not painful at all, just slightly itchy. It was on the upper part of my breast. I ignored it for about three days but it kept nagging me and then I decided to go see my doctor. He also confirmed that there was a lump on my breast He sent me for mammogram that confirmed an abnormality on the structure of my right breast. I then went to see him with the results and he informed me that there are two ways to test that lump – Biopsy, which meant that he will be taking a piece of that lump to send it to the laboratory for examination and the other option was to totally remove the lump, Lumpectomy. I decided that he removes the whole lump, because I really didn’t want that Lump on my breast.
SH: We know that about 10% of all breast cancers are hereditary. Are there other women affected in your family?
MK: I don’t know of any other woman or even man in my family who has had cancer, though it is hereditary.
SH: What were your first thoughts when you received the diagnosis?
MK: I cried for a brief moment. I was overwhelmed with emotions, fear of death. I quickly recovered from that dreadful thought and remembered that I have a great husband and three boys. I felt that I had so much to live for.The doctor informed me about the options I had regarding treatment and he gave me time to think about it. I drove back home to Lobatse and by the time I arrived at my house, I had already made up my mind that I am going for total removal of the breast. I broke the news to my family and they were just as shocked as I was when the doctor broke the news to me. I explained to them my decision to go for surgery and they were very supportive. Few weeks later, I went for a mystectomy.
SH: How long were you in treatment
MK: The surgery was followed by Chemotherapy. The first time I walked into the oncology centre, I found so many people there already. I then realised that I am not the only person with cancer, it is so many of us. It gave me strength and courage. I had heard that the side effects of chemo are brutal, seeing those people made me realise that if others can do it so can I. I decided to go for it as I had so much will and spirit to stay alive and raise my kids. After the second session of chemo, I started losing my hair, nail beds turned black. I was never discouraged though, despite my aching body and the constant nausea after chemo. I had six cycles of it. In 2013 around April again, I experienced severe pain on my left breast, but with no Lump. My doctor again recommended I go for a mammogram. It confirmed cancer which was still at stage 1. I then insisted that they remove the breast. I would lose both my breasts but I knew staying alive for my boys was more important. Other people thought the pain was psychological, and I knew what I felt and my mind was made up. I had the second mastectomy and had to go through another cycle of chemo which I completed. I am now on oral medication. I take my tablet daily. It is recommended that I take it for ten years. I have just started on my year 6 on the tablet. I do go for regular check ups, to establish if the cancer is not back.
SH: What helped keep your spirits up and gave you support during this period?
MK: A good friend of mine and colleague told me about Journey of Hope Botswana. He introduced me to them, and I had tremendous support from them. I also went to Cancer Association Botswana to introduce myself. My family has also been my backbone, supporting me through it all. I am so greatful. On days that my spirits are low, I always take my mind to positive thoughts. I try to remind myself of the good times, sometimes I even find myself laughing out loud.
SH: How has this affected you at a psychological level?
MK: My life has not really changed for the worst. Like the saying “when life gives you lemons, make lemon aid out of them”. I lost my job after the second diagnosis of cancer. While this affected my family financially I never got discouraged, as this gave me time to take care of my family. I am a full time stay home mom. I walk this journey with my family. My boys understand that I had Cancer but now I am okay. They sometimes check if I have taken my medication, and they would even ask about my next appointment. I am blessed to have them.
SH: Facing the diagnosis of breast cancer is one of the most feared experiences in our society. What has been your experience as you worked with communities through Cancer Association of Botswana (CAB)?
MK: Working with CAB has been eye opening. Through motivational talks and other actives like the annual stiletto walk, the message has been positively received. There is still a lot to be done though, especially to make people understand that breast cancer is NOT a death sentence. So many lives can be saved.
SH: Amongst raising awareness, cancer awareness month is about celebrating individuals like yourself and their triumphs over cancer. Is there anything you would like to say to the community of cancer survivors and women in general?
MK: I have learnt so much from being diagnosed with cancer. I appreciate life more. I never used go and see a doctor without any pains or any thing “wrong” with my body. Now I do it regularly and so far I always get a clean bill of health. I encourage everybody to do regular self -breast examination. It is easy, convenient, cost-effective and can really help with early detection. I believe there is a lot to be done as far as breast cancer awareness. Remember men can also have breast cancer.
To all those who are going through cancer at the moment, remember you are not alone. Let’s walk this journey together. Let’s walk with Hope, Courage and Strength. There is life after cancer. Cancer took away my boobs it did not take my life. As October is breast cancer awareness, let’s support those affected, honour the survivors and remember the fallen.
PINK RIBBON ALWAYS
Caroline Gartland speaks on Children and Mental Health
Tell us about yourself and your background
I’m originally from the UK but have been in Botswana for eight years so this is now home! I have a Combined Honours degree in Psychology an MSc in Mental Health and have had a pretty varied career.
I started off working with offenders doing rehabilitation programmes; went on to support the victims of domestic violence then ended up working in Child and Adolescent Mental Health Services for the National Health Service.
I’ve done a lot of work, mainly voluntary, in different fields since being in Botswana but my passion is now Early Childhood Mental Health.
What does your work entail?
Early childhood mental health is mainly working with parents, caregivers and teachers to help them understand how children develop and the best ways to support their mental health and brain development as they grow. It’s about providing training and opportunities for families to bond with their children and introducing new ways of playing and interacting.
What sparked your interest in early childhood mental health?
Quite simply, having my own children! My daughter was born five years ago and I was fascinated watching her develop and grow. It occurred to me that the younger you begin to consider mental health and provide tools for resilience against life’s adversities, the better outcomes you are likely to have.
I began reading everything I could get my hands on, and completed a diploma in Infant Mental Health. I’ve worked down the lifespan but I feel I’m now where I belong, working with babies and young children.
What mental health issues have you observed in children in Botswana?
Mental Health is still stigmatised around the world and Botswana is no exception. Most people immediately think of mental illness, but mental health is about so much more; we all have mental health and some days we are fine and able to deal with life’s challenges and some days we need more support and tools under our belt to help us cope.
Young children can experience mental health problems. Anxiety is a common one, but we are more likely to focus on the behaviour we see rather than how the child is feeling. An anxious child who refuses to go to school may be labelled as ‘difficult’ or ‘naughty’ but what they are expressing is a painful emotion that they need help dealing with.
Describe one thing you find fulfilling and challenging about working in this industry.
Working with children and families is a pleasure and a privilege. To make life a little bit easier for someone is all that matters, you don’t have to be out there saving the world to make a difference.
My major challenge is time. I would love to do more, I’d love to do an MSc in play therapy and a couple of other therapeutic techniques I’ve come across in Europe but that gets put on hold as I focus on my own family and business.
Can you share an anecdote about how mental health consultation works?
I think that education, understanding and connection are the three keys to giving a child the best start in life. Led by that, SensoBaby provides classes in the community for parents and caregivers to connect with their infants.
We offer workshops on parenting and play to foster understanding of child development and wellbeing and we are available to troubleshoot specific problems an individual or agency has with the young children in their care or the systems they have in place. When it comes to individual parents, mostly what they need is to feel heard, supported and guided in their parenting choices.
You can read all the baby books in the world but they won’t give you the answers you need for your child, through responsive parenting and connection, you’ll find you have the solutions you need.
What advice do you have for child-care providers or early childhood teachers who are at their wits’ end over a child’s challenging behaviour but don’t have access to a consultant?
Empathy is an important and undervalued skill – the ability to consider another’s viewpoint. What is that child feeling? Their behaviour might be challenging and hard to deal with but often the root cause is an unmet need. There’s a famous quote from an American Clinical Psychologist, “The children who need love the most, will ask for it in the most unloving ways.”
Does a mother’s mental health affect her foetus? How important would you say is paying attention to women’s well being during pregnancy as with their physical well being?
100% yes. It is so important to support a woman’s wellbeing during pregnancy. As an example, if the mother experiences significant stress and rising levels of cortisol (the stress hormone) during pregnancy, the foetus will be affected and in some cases will be more sensitive to stress in childhood or later in life.
Pregnant women and new families (Dads as well!) deserve nurturing care themselves and shouldn’t be afraid to ask for support. SensoBaby run FREE monthly coffee mornings to support pregnant and new mothers because we understand the importance of maternal wellbeing.
Do smart phones and television make our children mentally ill as is often purported?
I don’t think technology is always the villain it’s made out to be. The key is in the relationship with that technology. Moderate use of TV’s and smart phones are fine, as long as they aren’t a substitute for outdoor play, imaginative play and meaningful interactions. If a child is crying or upset and we hand them a device to keep them quiet then we have missed an important opportunity for connection, helping them process what is going on and supporting them to calm down and settle themselves.
Now, I know you are involved in an exciting programme that helps caregivers and children to bond and get the children off to the best start in life through play. Can you say a little bit about that work and just how you are seeing it play out?
SensoBaby is our baby; a project born from passion and a desire to support families in Botswana. We offer play-based classes for children and their caregivers that are underpinned by the principles of child wellness as well as early foundations for learning.
When you provide developmentally appropriate opportunities to play, you learn so much about your child. That understanding and observation builds strong connections, which will form the basis of that child’s future relationships and self esteem. Play is so much more than ‘a fun activity.’
We offer a number of trainings and workshops for parents, nannies and community stakeholders and hope to increase our offerings this year. Our community partnerships and voluntary programmes have been successful so far and we hope to see more impact in 2018.
We currently serve the Gaborone community but would like to expand throughout Botswana as opportunities arise. The response to SensoBaby has been fantastic so far and we can’t wait to see how far we can go with the concept!