Over the years, discriminatory and offensive words and terminologies have not only been used for children with special needs; parents and care-givers have also had their share, as if it were their fault that their children are in this shape. This has made parents and care-givers have some kind of self-pity, and left them with emotional, psychological stress and withdrawn from society.
We are tired, the self-imprisonment it enough; we can’t keep hiding or keeping these children indoors just because you are afraid, don’t like them or uncomfortable to see them around. We want to take our children to playgrounds, parties and shopping centres; they love to feel nature, to see the sun, moon and stars.
Children with special needs can be grouped into four. The physical – which includes muscular dystrophy, Multiple sclerosis, chronic asthma, epilepsy and so on. Developmental – including Downs syndrome, autism, cerebral palsy, dyslexia, processing disorders. Behavioural – which includes Bi-polar oppositional defiance disorder. And lastly, sensory impaired – which includes the blind, visually impaired, deaf and limited hearing.
Changing the image and reputation of children with special needs requires a collective responsibility. It starts from the family, our churches and then the community. I believe in the power of the media. That is, giving their medium as a platform for massive education. This will help curtail and eradicate all forms of negative perception and criticism. At the end, it will foster love and harmony and bring back a sense of belongingness in the society.
In the recent years, Ghana has seen a rapid upsurge of nongovernmental organizations … which serve as a channel for philanthropist to get into contact with the concerned. Some are really doing great jobs helping these children get right equipment, scholarships to special schools (because it’s expensive and parents can’t afford it) and other materials for everyday life.
Most support groups have bridged the gap of family neglect because they have served to offer physical, emotional, psychological and even financial assistance to the parents concerned – because most parent feel free to share their emotions through the platform to encourage and get counselled by others as well
Others have emerged as means for selfish self-enrichment, whereby all they do is to have contact with numbers of parents having children with special needs. Some organizations go as far as having these children’s pictures. They seek help with the names and pictures of the people, collect the things on their behalf and never give them to intended beneficiaries.
Others also call parents or care-givers, bag the items from donors and take pictures which they can show to their sponsors. After taking the pictures (to show to their donors) they take the things back from parents, or reduce the items by telling mothers and caregivers so many stories. “Oh sorry, the items are not enough,” and many more
Now that era is fading away and you can no longer play with the ignorance of parents and care-givers, because the various supports groups are willing to go all out to do advocacy and promote a cause.
What are the primary objectives of these support groups? Firstly, to boost of internal communication and also to gather data. That is, ideas generation that will enhance activities and bring help to group members and the special children. What is the challenge when things go wrong? Members get scared to speak out because if you do your name will be taken off the list (for help from donors). This is a clear picture of fraudsters preying on their host. It saddens my heart that these leaders still expect you to say “thank you, God bless you” and so on when they are killing you silently.
My perception is that supports groups help develop self-esteem, because building self-esteem is worthy or very important for people who have encountered much adversity in their lives. But there are cases where some support group leaders reduce mothers or care givers to nothing because of ignorance.
The aim of these groups is to help the public understands that some of these children are capable of accomplishing much and can grow to become responsible adults – and therefore deserve equal access to education. So I feel the aim is sensitistise the public to create a conducive environment so that parents and care-givers can feel free; because the situation is unbearable as medications are expensive so most children are not on any medication at all.
Special schools are expensive, too. The situation clearly defines How life should be (stay home and die); but also to partner with cooperate organizations that believe in cooperate social responsibility responsibilities to help with mothers who can’t afford to send kids to the schools, and as a way of sponsorship for the children so that mothers can get back to work. Their children should not be the reason for joblessness. Some parents just need someone who will employ a nanny and pay on their behalf as a way of sponsorship so that they can move on with their lives, because their care is 24/7.
The majority of caregivers or parents are ready to do something to enhance their lives, but we don’t see help forthcoming. Parent are likely to resent their kids at some point because the situation makes their lives come to a standstill. So, if the situation gets to the extreme they resort to performing traditional rituals and the kids can pass away (die).
As part of my journey in the past couple of years, I have reflected a lot on the effect of having a special child as well as what caring for them feels like. Some people are so attached to these children because they feel they are vulnerable. Can government do anything to make life more bearable for children with special needs and their care-givers?
I believe it is a collective e responsibility. I call on the media to give more platforms to help disseminate education to the public that it is not a curse but generally neurological disorders caused by non-progressive brain injuries or malfunctions which occur while the brain is undeveloped. This can happen before, during or after birth
This calls for the extension of physiotherapy services for these children. The aim is to bring childcare service right to the doorstep of parents or caregivers After all, while special education is not to fix children’s imperfections every child should at least be given equal access to education.
In my opinion, most parents know what their children really need; and yes, some mothers feel their children are vulnerable with regard to eating (feeding pattern), sleeping pattern and even crisis situations. Other also feel their children are fine with school. The special mothers are striving for more services so that parents can have options which best suits; and also creating career opportunities for mothers by liaising with Montessori schools to train mothers in this area so that they can be employed. As mothers in these shoes, this is our narrative and we are calling on government, the health sector and schools to involve us in decision-making in this area. We are ready to partner with churches, schools and corporate organisations to change the image and reputation of children with special needs
We need more support systems to help enhance the lives of parents and caregivers because parenting demands are hectic – physically, financially and even psychologically stressful. A little push of sponsorship for a child to go to school will go a long way to help a parent or care-giver live and get back to work. We don’t have any excuse regarding our visions and aspirations in life. Our children can’t be our excuse for not being who we want to be.
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