In Other News: Let's Talk Cerebral Palsy

Growing up, my first information about cerebral palsy was from Nollywood comedies. Nigerian movies would have one character who was regarded an “imbecile”, that would have no control of his limbs and mouth, and would drool. These characters would walk funny and talk funny.

When I grew older, and I volunteered at an autism centre, and then met a child who had cerebral palsy and autism, I became so angry with those comedies. I was angry because rather than get educated about the disorder and create positive awareness about it, these people were compounding the issue and increasing stigmatization about cerebral palsy and other developmental disorders.

So what exactly is CEREBRAL PALSY?

Cerebral palsy (CP) is a disorder that affects body movement, muscle tone, muscle coordination, muscle control, posture, balance, reflex, and motor skills. It occurs when there is a damage to the brain before birth, during birth, or during the first 3 years of life; at these times, the brain is still developing.

There are different types of CP; spastic CP causes stiffness and movement difficulties, athetoid CP leads to involuntary and uncontrolled movements, while ataxic CP causes a problem with balance and depth perception. Some people with CP have a mixture of 2 types, and this is called Mixed CP (simple, right?)

Founder Cerebral Palsy Center, Nonye Nweke and her daughter Zim
photo credit: Mrs. Nonye Nweke

Like autism, cerebral palsy ranges from mild to severe, so some people with CP are more limited than others. I have worked directly with at least 3 children with CP; 1 of them could walk without aid, one walked with braces, and 1 had no control of his limbs. Cerebral palsy affects standing, sitting, walking, talking, eating, and many other things depending on the individual. For some people with CP, the condition may also cause hearing or visual impairment, and speech limitations.

Although some children with CP may have learning disabilities, many of them are able to successfully learn and build a career. Like I said earlier, I have worked directly with 3, and 1 of them in particular was very intelligent, even though he could not walk, use his hands, or control his mouth muscles to talk.

Farida Bedwei
photo credit: www.bellanaija.com

In 2015, at the International Conference on Disability in Lagos, one of the speakers was Farida Bedwei, a Ghanaian who has CP and is the owner of a major IT firm in Ghana. I have a friend who has CP, and is a lawyer and a disability advocate; Tobiloba Ajayi is also a Mandela Washington Fellow. Both Farida and Tobiloba attended mainstream schools, not special schools.

Tobiloba Ajayi
photo credit: MWF2016 Impact Story

And that is why I am angry with the image Nollywood gave of CP, because Cerebral Palsy is not comedy. The stigmatization of CP kids is one major reason schools do not know that these children can learn. Parents of children that have cerebral palsy need to know that there’s help for their child, even though he/she has special needs.

There is currently no cure for CP, but there are therapies that can help the child achieve maximum potential in growth and development. Physiotherapy and occupational therapy can help to improve motor skills, sitting, and movement. Speech therapy is also known to help with speech limitations. Like it is with autism, there are devices and apps that assist individuals with CP with communication. And as is said, love is the biggest form of therapy, because it is the foundation for all therapies. Stigmatization of people with CP should be stopped, and we should love them instead.

Physical therapy for a child with CP
photo credit: Cerebral Palsy Center

Tomorrow (March 25) is Cerebral Palsy Awareness Day, and the Cerebral Palsy Centre (CPC) in Lagos is organizing a walk for CP by 8 a.m from the National Stadium. My friend Tobiloba Ajayi is also organizing a seminar (and launching her third book. Whoop!), with the theme Inclusive Mainstream Education for children with CP at Ikeja by 11 a.m.

I have seen children with CP learn, and I have seen adults with CP who are successful because they were given a chance to be all that they can be, without focusing on what they could not do.

The Cerebral Palsy Centre is doing an amazing work, especially helping children with CP whose parents have abandoned.

Benola Cerebral Palsy Initiative is also doing an amazing work creating awareness, encouraging an inclusive society, and providing support for individuals with CP.

You don’t need to have a child with CP to help children with CP and their families. Support these people that have become a voice for individuals with CP in Nigeria.

You can reach Benola by visiting their website www.benola.org and reach the Cerebral Palsy Centre on their website www.cpcenter.com.ng

Taking Advantage of Technology

Sometime in 2013 or so, at the GTB Autism Awareness Seminar, there was a man that spoke with us about how children with autism in the US were doing well with iPad apps. A few Nigerians that could afford iPads bought for their children, and schools also invested in iPads. 

Unfortunately, quite a number of Nigerian families cannot afford an iPad, but at least the middle class families can afford smart phones, android tablets, and the likes. For a long time, these families did not know that their children on the spectrum could benefit from these smart devices they possessed.

Last year April, I attended the Autism Society West Africa (ASWA) Conference, and a group called Autism Ambassadors of Ghana gave a talk on how children with autism are responding well to technology. From their talks, I appreciated that there are apps on smart phones that can be useful for individuals on the spectrum. The group has an amazing app called Autism Aid App on Google Play store (I use it in my work). It gives information on autism, so you can use it for awareness; it has pictures, numbers, alphabets, which you can use to teach or for PECs.

Different apps serve different purposes for children on the spectrum, and they respond differently to different apps. I was sharing with a mom recently on how a child could respond well to a particular app, and may not do well with another app that has a similar function. Although they respond differently to different apps, I can say that working with apps with children makes learning more fun. I use apps that they like as reinforcers when they do well in tasks that they don’t like.

Apps can be used to build communication skills, cognitive skills, and attention skills in children. I am a huge fan of puzzles, because the kids I work with pick up fast on puzzles, building their cognitive skills. With puzzles I can teach about animals, object identification, fruits, numbers, letter sounds, almost anything. I have seen children improve in attention skills as we use apps on iPads and on my Android phone (yea, I use my phone).

Communication apps help the child to communicate, so the child will be happier and tantrums will reduce. The most popular communication app seems to be the Proloquo2Go, but there are others that you can pay for and some that are free. The iCommunicate, iComm, My Talk Tools, Look2Learn are examples of apps that serve as Augmentative and Alternative  Communication (AAC) tools on the iPad. I mentioned in a previous post that AACs help not only to give an alternative to speech, but many children on the spectrum have built speech and language skills by using alternative forms of communication (Read about that here). On Android, there is the Touch and Speak app that you download for free and upgrade by paying a fee. LetMe Talk, Diego Says App, iToucan Talk, TalkinPictures are examples of AAC apps that you can find on Android.

Apps can also be used to teach self-help skills, literacy/reading, Maths skills, in fact almost anything you want.

The major way to know about apps that you can use to meet a particular need is by referral (someone telling you) or searching online. But one thing I do is search “autism” on iPad App store or the Google Play store for my Android. I find so many options, and then I can pick anyone, whether it’s free or I have to buy. You can try that too.

As good as using apps are, they can be abused. It is important to know what exactly you want to address in your child before downloading or buying an app. Apps are not a cure for autism, they are tools that go hand in hand with therapy. Interact with your child’s therapist, decide together on what apps you need for your child based on what you want to achieve. Sometimes the use of a particular app is to engage your child while you are busy, while some other apps are meant to build specific skills, as mentioned earlier.

Another thing to watch out for is addiction. Apps are predictable for our children on the spectrum, and can therefore be addictive. It fits their lifestyle of stereotypes and routine. In my opinion, it is important to put structure in how they use gadgets and devices, except it is being used as an AAC tool. For example, you can tell your child that he can get, let’s say the tab, or he can play a particular game when he is done with another activity. Even when I reinforce with an app, I decide how long I want the child to have it, and I insist that we change activity (off course, with a promise that he/she will get the device back when we are done with the next activity). Like I said earlier, the children I work with love puzzles, so I have to decide how long we want to fix puzzles for.

Although gadgets, devices, apps are not miracle workers, I personally have seen how well children on the autism spectrum respond to them, so I use them and encourage others to do so too. If a child does not like a particular activity, I try another one. I know I will eventually find one that the child will like, and I can use to achieve the goal I have set.

I hope this helps. I wish you an "Appfull" day with your child #BigSmile.