After this, it’ll soon be another and another and yet another! As the Themes and global focus change, we seem trapped somewhere in this cycle. Where exactly is our position in all this? I don’t think I’ve ever been able to decipher exactly where a cycle starts or ends. All I know is that there’s roundness. Please pardon the fact that I do not have a mathematical mind. I really do not know how my hubby who thinks in figures, shapes, and measurements copes with me.
Anyways that’s not what this post is about.
Today I’m considering a condition that is said to be the most common childhood disability. Come to think of it, this Cerebral Palsy is known to be the most expensive, tasking, and probably painful physical disability. Of course, no two cases of CP are the same but then these are accepted facts.
6th October is globally recognized as a day set aside by the United Nations to celebrate warriors with this condition.
Hmmm, I wonder who taught me to describe these wonderful personalities as WARRIORS? I think it’s such a beautiful description that suits them so nicely! Look, I’m an Ijaw lady by tribe and local massage is one of our trademarks but you can’t find me on the mat! I consider myself someone with a high threshold for pain but you see ehn, therapy is not easy!
One individual, endless sessions of physiotherapy, Occupational therapy, speech, and all kinds of intervention yet with a gloomy verdict of life-long management as against cure. Chai! People with CP and their families dey try!
My thoughts aren’t organized so please pardon me. How can I attempt to write logically in the face of sad realities?
Do you know the average cost of maintaining a child with cerebral palsy?
Look, I don’t want to talk about this focus of this year’s celebration. ‘Technology That Makes lives of people with CP better. ‘What’s that???’ several indigent parents responded when I tried to have a conversation about this.
What does this mean to a family with a minimum wage of N40,000? Can we pretend not to know that there are still some parents, siblings, teachers, and even medical practitioners who do not know the name of the condition?
Only yesterday, a mother tearfully informed me that her 3-year-old daughter was sent home from school and asked not to come back because she couldn’t fit into the classroom!
Sha, I’m not a spoiler and so I must move to the brighter side.
My bright side is a beautiful teenager called Blessing. That’s her real name and I chose to use it because there’s no better name to call her. My crush is a BLESSING. She’s cute, smart, determined, focused, and eager to learn new things. My cutie isn’t limited by Cerebral Palsy but by the lack of a conducive environment for her to thrive. She’s limited by rejection, poverty, unfriendly stares, and societal barriers.
Anyways, I have great news! I see Blessing soaring above negative perspectives and creating new paths of accomplishment because She’s got FIRE, GRIT, and TENACITY.
I believe in my CP crush.
I love my baby B.
I have millions of reasons to celebrate Blessing, Nimi, David, Daniel, Ifeanyi, Raphael, Faith, and Brian…if you feel me, please copy and edit to add up the name (s) of your special warriors on such a beautiful GREEN day!
So long!
Na Biby Yinkere dey sign out with millions of kisses
We the entire Engraced time are grateful to mark another children’s day with all children around Nigeria.
We want to use this opportunity to appreciate everyone who has supported the growth of the special needs children in our care.
We are grateful for you who have volunteered to be a tool for awareness creation.
Our prayer is that the Almighty God will continue to bless and keep you in Jesus name. Amen!
We also pray that these young children will continue to grow in the ways of the Lord and they shall achieve everything they dream of In Jesus name. Amen!
At age 2 she had open-heart surgery and another for adenoids at 3. Her parents could hardly afford these surgeries which are either free or highly subsidized abroad.
How can we talk about early intervention in healthcare when these services are way too expensive? Early intervention is broad-ended. However, I’ll be focusing on special needs education.
Early intervention refers to an early start of therapy, education, medicare, and other activities crucial in the early years of a child’s developmental stages as it can minimize the effects of young children who are at-risk or diagnosed with developmental disabilities, to enhance the potential for independence in adulthood.
The ultimate is for children with disability to be in inclusive schools so they can gain strength, learn from those who are more endowed, and build healthy and invaluable friendships.
Sadly, there are many complexities when it comes to the educational needs of a special child.
Below are a few;
1. Teachers in either inclusive or mainstream schools must know about my special needs.
2. They need love, empathy, patience, and willingness to teach.
3. Educators need training and retraining to comply with the going trends in special needs education.
4. Willingness to implement the child’s IEP and collaborate with parents.
5. Who pays for the training of teachers in inclusive and mainstream schools?
6. Are we ready for inclusive education in Nigeria?
7. Why the delay in the implementation of the National policy in special needs education?
8. Am I being over-ambitious when I refuse to give up on an educational dream for my child?
9. Should I give in to the educational bureaucracies in Nigeria?
10. How many parents can afford the fees in private special needs schools?
11. Why are the Local Districts, State, and Federal governments not taking responsibility for this kind of education as we see in other parts of the world?
12. When will schools stop rejecting children with special needs???
13. Can all special children learn?
14. Who regulates the cost of special needs education in Nigeria?
Hmmm, Sophie, Mimi, and I are fighting too many battles oh!
Covid 19 came like the world was going to end yet we learned to live with it. We were told contact with one infected person could result in multiple deaths yet we braced up and insisted ‘there mustn’t be sigma’!
When I say ‘Down syndrome is not a disease it is not a religious statement but one backed by evidence. I mean I’m AN EVIDENCE! I’m hardly ever ill, neither have I succeeded in infecting anyone especially babies whom I love so much!
According to the National Down syndrome Society (ndss), ‘Down syndrome is a condition or a syndrome, not a disease. People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
Babies with DS may come with holes in their hearts or congenital heart disease. This requires surgery which cost millions of Naira. It also requires periodic management which most families cannot afford.
In most parts of the world, the government pays for these surgeries but sadly, you find families immediately turn into beggars in Nigeria as a result of desperation to preserve the life of the child. Speech impairment is a major concern. While some persons with DS may never speak others may if the right speech pathologists are engaged.
The problem again is the high cost and more worrisome the availability of proficient pathologists. If you’re reading this and you have the condition of a child with it, please do not let the number ’21’ steal your joy.
In all, let’s not over flog this matter, I AM NOT A DISEASE but a glorious image of my maker (God please give my readers eyes to see and hearts to receive this information )Amen
There used to be a myth that older women are more likely to have DS births. This has been scientifically proven to be untrue. In countries such as Iceland, women who were screened and had high indications for DS were encouraged to abort the pregnancy
In conditions like Autism, ADHD, and others, there is no screening before birth. This is a sensitive subject that must be addressed!!! Now pregnant women could undergo the NUCHAL TRANSLUCENCY TEST. This screening in some parts of the world is done early enough in pregnancy as part of routine prenatal testing. It doesn’t give a specific outcome but a statistical likelihood of the occurrence of DS.
Pregnant ladies could also have the CHORIONIC VILLUS SAMPLING (CVS ) and amniocentesis tests done, both diagnostic tests can confirm whether or not a baby has a chromosome abnormality.
Here, there is a risk of pregnancy loss. While it may help the parents know what to prepare for after delivery, our worries are, how many women would opt to go ahead with such a pregnancy? Now let us shock you! In the voices of our moms, ‘dem plenty”
Like we said earlier it may result in a whole moral debate that we’re not capable of passing judgment. However please give thought to our fears. Like our friend Isioma said yesterday, *the discrimination of persons with Down syndrome now starts from the womb*Right now we feel so sad we need to go get some snacks to brighten ourselves up
Written by The Engraced Ones in Support of Down syndrome Awareness
March 25th is generally recognized as Cerebral Palsy Awareness Day. Now Cerebral Palsy (CP) is a lifelong physical disability that occurs as a result of injury to the developing brain It affects over 17M people globally.
Unfortunately, in about 8 out of 10 cases, the specific cause is not known however, prematurity is often a major factor to watch out for. At the moment, there’s no known cure but Physio, Occupational, and Speech therapies may be very helpful.
This does not however imply that all persons with the condition have speech problems. No two cases of CP are the same and there could be co-morbidity, that is, other related conditions like seizures, autism, and hearing impairment amongst others.
CP is extremely expensive to manage. It’s interesting to note that CP is not a disease nor is it contagious. It warms my heart to know that the condition doesn’t worsen throughout a person’s lifetime. I’m thinking aloud now, are medical practitioners intensifying efforts to discover the exact causes and cure for it???
Written by The Engraced convener- Mrs. Biby Yinkere
too many battles oh!
)Amen
aloud now, are medical
practitioners intensifying efforts to discover the exact causes and cure for it???