Not too – FAQ

Well, a doctor once told me I was just unlucky and it got me thinking. I do not believe that anything happens to a child of God and God is not aware. I do not know the end from the beginning or the reason God allowed it but he does. One thing I know is that I would never have taken up advocacy for children with special needs if I never had a child with one. I do not count myself unlucky in spite of what the world thinks. I daily depend on God for strength and I see him prove himself. God is faithful… He has never failed, and he will not start with you and I.
A pediatrician once told me something that helped shaped my mindset from start (even though I still did my own research and made some few mistakes). Don’t go around the world looking for a cure. As at May 2017, there is no cure. However, it is non-progressive, which means it cannot get worse. The fact that a child has cerebral palsy doesn’t mean the child cannot live a healthy and meaningful life, depending on the diagnosis. The first thing to do is to get a correct diagnosis from a reputable hospital. Some kids may need surgery and drugs but most kids need therapy. For more information on steps to take refer to our page on cerebral palsy.
Early intervention is the term used to describe services that reach a child early in his or her development, usually from birth through age three. Intervention is vital during this very early time because a child learns and develops at the fastest rate during these first few years. It’s important not to miss out on this crucial part of your child’s development, as it may be more difficult to teach skills to your child as he or she gets older- United Cerebral Palsy. Having said that learning continues…it only takes patience, love, consistency, tenacity and perseverance. Depending on your child’s diagnosis, from severe to mild cerebral palsy;-this will also affect the rate at which your child will be able to learn. Remember, never say never!
Children with mild forms of cerebral palsy have a normal life expectancy. In fact a lot of children with Cerebral Palsy live into their adult years. However this is also dependent on some other factors such as if the child has other health complications. Otherwise, your child is here to stay unless you have plans of killing your child. That would be called premeditated murder liable to capital punishment and in case nobody finds out, you will forever carry a heavy burden of guilt.
People often ask me ‘is your daughter getting better?’ Is she responding to treatment?’ With Cerebral Palsy improvement is not magic. Except it’s a miracle from God which I pray for every day. You should learn to celebrate the little milestones achieved. Different therapists have given me glorious testimonies of their past patients. However, cerebral palsy affects each person in a different way, so no two persons have the exact same experience. So if child A does therapy for 6months to a year and the child has obvious improvement and child B takes about four years to make that same achievement, does it mean the Physiotherapist could not perform magic? Not really, it may mean your child’s diagnosis is different from the last child he worked with. Keep doing the therapies, if you are not seeing results, do a critical assessment and review your therapy plan. Never give up.
Cerebral Palsy is a medical condition. I repeat, cerebral palsy is a medical condition. The earlier you start to see it for what it is, the earlier you make a head way in the management.
I am not against prayers, but first, you must understand the reason you are taking your child for prayers. If you would take your child for prayers if he or she has malaria then you can as well take your child who has cerebral palsy for prayers. If you think your child has demonic powers then that is where the main issue is. The truth is your child doesn’t need to have cerebral palsy to have a demon. Neuro typical developing children too can have demons. In fact if you have ever been to a deliverance praying church, you would see that lovely looking sisters also fall and roll on the ground under the anointing. If you attend a bible believing church and your pastor wants to pray for your child, there is no problem as long as the prayers are based on the word of God (which you the parent has read before and understood.) Do not be deceived, many people will see different visions; they will lay the root cause of your child’s medical condition at the feet of your enemies (not the devil but human beings with names attached to them) My opinion, stand in the gap for your child. Pray for your child as an authority over the child. Look for what the bible says concerning healing and say it over your child. People will come with all sorts of advice. Some may say there is a powerful man of God that can heal your child. If you must, tell them to go on your behalf without your child. Their prayer of faith should touch your child wherever your child is. Beware of false prophets; you will wear yourself and child out by going from one prophet to another, from one church to another. May the Lord give you wisdom.
I have friends who love and accept my child but largely, there is still a lot of ignorance as regards cerebral palsy. Some friends come to my house and completely ignore my child, they prefer to interact with my typical developing child. Some would not even invite her for their kid’s birthday parties. Well I still take her for the parties anyway, lol. I also try to educate people that come to my home about my child. I like to tell them that she knows most things children her age are supposed to know even though she can’t pronounce them clearly. You will need to educate the people that you come across about your child’s medical condition.( Please don’t be rude or nasty to people who do not understand your child, thank you.)The most important thing they need to know is that it’s not contagious, lol. I recently visited a public primary school in Lagos Nigeria that practice inclusive education. I was told that when Lagos State government introduced inclusion in that particular school, some parents withdrew their children from the school. However, the most interesting thing happened. An NGO got Oando Foundation to renovate the entire school and donate playground equipment. I was impressed with what Oando did at the school. Parents started begging to have their children attend the school. It’s really amazing.
Having a child with disabilities is not a death sentence. Yes, u can cry for the child you wanted to have but did not. Thereafter, stand up and pull yourself together. There is work to be done. You need to find out about your child’s therapy plan and what works for you and your child. If you cannot afford private therapies then you need to find out what government hospitals you can get affordable therapies. You need to look for a school that can take your child. If you can afford a care giver, then you need to diligently pray and search for one
The best place for a child to be and thrive is in a child’s home with the child’s family. The first thing a child needs is love and acceptance. No matter how severe the case may be. If you are totally incapable of taking care of your child then you may consider a home for children with disability. In Nigeria, if you have actually visited a home for children with disability then you would understand that keeping your child at home is better than taking your child to one.
When Jesus was on earth, he healed different people, for some he did instant healing; just by the his word, for another he put mud on his eyes and told him to wash by the pool. I do not know how God will heal your child but even your child’s little milestone achievements are miracles in itself. Jesus’s disciples saw a man that was born blind and they asked his disciples, who sinned; this man or his parents? Jesus said neither of them but that God may be glorified. Stay positive, don’t lose hope. God is not angry with you. He makes all things beautiful in its time
I know two young adults with disabilities. One of them, with all she has been through still radiates love and warmth while the second has become bitter and angry. You may not be able to stop others being hateful and spiteful to your child, but you can teach your child how to love and forgive. People act based on their knowledge per time. If they know better, they would act better. All said and done, defend your child, as much as possible don’t put your child in harm’s way.
Keep looking, don’t give up. Don’t put your child in a school that feels they are doing you a favor. In fact teach them to educate their academic and non academic staff about disability and acceptance before putting your child in their care
Educate yourself by doing a quick research online. Don’t be afraid to ask questions from the parents. Some may be secretive about their special needs child, (ok, so just pray for those ones) but really just say hello to the child and teach your children to be nice and friendly.
Just say hi! From there you can start a conversation. You will be surprised. Sometime ago, I walked into a classroom with children with different special needs and this young boy who has down syndrome walked up to me and gave me a welcome hug. I went round giving everybody a handshake. Two boys who were autistic ignored me but all the other kids responded and when I was leaving the classroom the young boy who has down syndrome requested for a goodbye hug. That was a public school in Nigeria. I made friends and I am certainly going back there.

One thought on “Not too – FAQ

  1. Hi there, I read your post on Bellanaija about the very sad incident with the physiotherapist and your daughter. I couldn’t go past the 1 minute mark. I am so sorry! Words fail me.

    I hope you don’t get offended by this but I would like to recommend the Healing School at Christ Embassy church to you. It’s a school, not a home where students with all kinds of ailments and sicknesses and conditions are taught the word of God on their healing. I can recommend it to you because I have been a student and I know how my life has been changed by it. You may have heard of it, please visit enterthehealingschool.org for more information. God bless you and your family. Take care.

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