Cerebral palsy

What you need to know

Cerebral palsy is an impairment marked by poor muscle coordination or movement disorder caused by damage to some parts of the brain. This may occur before birth, during birth or the early years of a child’s life.

 

Do you know that we need our muscles for everything that we do? We need our muscles to talk, cry, smile, sit, stand, walk, raise our head, carry objects or hold things. We even need our muscles to pass feces.

Children who are likely to have cerebral palsy:

  • Where mother experienced prolonged labour during child birth
  • Babies that were born too early (premature birth)
  • Low birth weight in babies
  • Babies that suffered from head injuries
  • Babies that contacted Infections such as meningitis, e.t.c.
  • Babies that had severe jaundice after birth

Types of Cerebral Palsy

  1. Spastic – Tight muscles, awkward movements
  • Diplegia- both legs affected
  • Hemiplegia- One side (arm and leg) affected
  • Quadriplegia: both legs or both arms paralyzed or weakened
  • Double Hemiplegia- Both arms affected more than the legs
  1. Dyskinetic- Involuntary movements
  2. Ataxic- Challenges with balance, depth perception, shaky movements
  3. Mixed CP- A mix of other CP types

 

How do I know my child has cerebral palsy?

Symptoms in babies

  • Low muscle tone (baby feels ‘floppy’ when picked up)
  • Unable to hold up his/her own head while lying on their stomach or in a supported sitting position
  • Muscle spasms or feeling stiff
  • Poor muscle control, reflexes and posture
  • Delayed development (can’t sit up or independently roll over by 6 months)
  • Feeding or swallowing difficulties
  • Prefers to use one side of their body

 

Symptoms in toddlers/children

  • not walking by 12-18 months
  • not speaking simple sentences by 24 months

How do I help my child?

    • Your child will need to be assessed by a doctor with special interest in children and development (neuro pediatrician)  
    • The doctor will ask for the mother’s pregnancy history, situation of birth and the child’s welfare till date.
    • A full examination will be conducted
      • Blood test- Other health problems may cause symptoms that are similar to cerebral palsy. To rule that out, the doctor may recommend blood test
      • MRI-Magnetic Resonance Imaging is a medical imaging technique to produce a detailed image of the body’s soft tissue and bones.
      • EEG- (Electroencephalogram) For this test, small electrodes will be stuck to your baby’s head to measure his brain waves. Sometimes this test helps to detect epilepsy (seizure disorder)
      • Audiologist (hearing)
      • Ophthalmologist (vision)

 My child has been diagnosed of Cerebral Palsy

What next?

Things to note before treatment begins.

  • The damage is permanent
  • The damage does not get worse but without care and attention the child’s health may deteriorate with time
  • There is no cure for cerebral palsy
  • Early Intervention is key in treatment or managing cerebral palsy.

 

What is early intervention

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.

 

Professionals that may work with your child

  • Physiotherapists – They will help identify and treat your child’s movement disorder through movement and exercise, manual therapy, education and advice.
  • Occupational therapist- They will help your child acquire skills for daily living such as sitting, using of hands to perform functions and many more
  • Speech therapist- They will work on your child’s communication skills, speech development and feeding
  • Special educators- They will work with your child to determine educational needs

 

What is the role of the family

  • Ask as many questions about your child from the doctor
  • Read books to learn more about cerebral palsy
  • Create a loving environment for your child
  • Be your child’s advocate – defend your child’s rights

 

Inclusive education for children with disabilities

My name is Bukola Ayinde and I have a five-year-old daughter who has cerebral palsy. Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by damage to some parts of an immature developing brain.

When my daughter Oluwalonimi whom we fondly call Nimi was just a little over a year old, her paediatrician recommended that we take her to a neurologist for an assessment.

She was assessed by a professor at the Lagos University Teaching Hospital. At the end of her assessment, she was graded as a stage 5 (stage 1 being least affected by cerebral palsy and stage 5 meaning most affected). My husband and I were told she would never be able to do a lot of things. We were told she might never be able to walk or talk or sit independently among other things. We took our beautiful daughter home knowing we will love her no matter what.

 

Not knowing what to do, being a first-time mum, especially a mum with a special needs child I asked around and someone suggested I take her to a special needs school. I was directed to a special needs school on the mainland in Lagos, Nigeria. After six weeks, my husband and I took our daughter to the Peto Institute in Hungary, Europe. It is a school for children with cerebral palsy.

Being in this school with my daughter made me realise that children, no matter their status or medical condition should be treated with dignity. It was a beautiful school with great facilitators. The entire facility was adapted to meet the children’s needs. The chairs and tables were suited for them. There were long horizontal bars by the sides of the wall that the children could hold on to. This would enable the ones that could walk with support move along the corridor of the school on their own.

The restrooms were also adapted for their use. Instead of a handle for flushing the toilet, there was a rope to pull which was hanging down from the top of the restroom wall. It was easily accessible to any child who had shaky movements or unstable grip which is common with people living with cerebral palsy. Our daughter attended the summer session and we could only stay for a month.

When we returned home, I made up my mind that my daughter wasn’t going to attend a special needs school in Nigeria. I had seen the difference when I travelled to Peto and I knew there was no centre that could provide that in Nigeria. I decided to homeschool my daughter and recreate the Peto experience.

My husband and I employed a speech therapist, an occupational therapist, a physiotherapist and a professional caregiver. These four professionals attended to Nimi at home. One of the therapists told us about the benefits of inclusive education. In Inclusive education, children with disabilities and those without disabilities participate and learn together in the same classroom.

The therapist said this type of education will improve my daughter’s social skills. On further research, I also discovered that when children with developmental disorders learn together with other children who do not have any developmental delay, children with developmental disorders tend to imitate the actions of their peers such as crawling, standing or walking. Please note that children without disabilities will not copy actions such as not being able to sit, stand or drool. They would not also get infected with cerebral palsy because it is noninfectious.

Children without disabilities also gain from this interaction because it enhances creativity in the classroom. It teaches acceptance of difference and the children to learn to be more accommodating and show empathy to other children.

My daughter’s therapist suggested that we find a regular school that Nimi could attend. This woman promised to give us a caregiver that would stay with Nimi at school.

I bought into the idea and began to search for a school. Getting a school for my daughter wasn’t as easy as I thought. I didn’t want her to go far away from home but at the same time, I wanted a good school that could meet her needs. The proprietor of the first school I went to said there was no space to meet her needs. I made a list of the schools she could attend and discussed the options with her therapist. The therapist works with children in various schools around Lagos. One after the other, we had to tick off many schools from the list.

The thought of subjecting myself to a series of rejection did not sit well with me. I spoke with the mother of a special needs child and she recommended her daughter’s school. I visited the school and met the proprietress who was very welcoming. She gave me a date to bring my daughter and her caregiver for an interview. I was nervous, praying they wouldn’t reject my daughter too. My husband came along with us for the interview. At the end of the interview, Nimi was given admission to the school.

Even though Nimi could not talk for a long time and we were not sure she was learning anything, we kept her in school with her peers.

When Nimi was physically assaulted by one of her physiotherapist, I withdrew her from school. I was through with mainstream schooling; I was determined to homeschool her myself. I asked some of my friends who had children in Nimi’s age grade what their children were learning in school. I wrote a study plan and we started homeschooling. She also had a nursery school teacher who attended to her at home three times a week. She taught her sounds and numbers.

We were later encouraged not to allow one ugly incident keep Nimi away from school. Although I was scared, I decided to give it another try. This time I looked for a smaller school that could meet our needs.

A big thank you to all the speech therapists that worked tirelessly, the occupational therapists, the physiotherapists and our beloved caregivers.Thank you for believing in our dream that Nimi could learn. Thank you to all Nimi’s teachers and school proprietress who gave her a chance to study with her peers.

After close to three years of Nimi attending school and learning to read, she exceeded our expectations. At age four, she could identify all the 26 letters of the alphabets and associate them with objects. She could count from 1 to 50 and also count backward up to 10. Today she is able to read from 1 to 150. She is able to do her numeracy; additions and subtractions.

Her class teacher once told me that if Nimi feels she is being neglected during a class session, (maybe the teacher is not asking her questions or not making facial contact with her) she would get her teacher’s attention and show her displeasure. That was achieved by social interaction.

I remember her school’s Christmas party, her class teacher asked the children a question, ‘What are the things that help a plant to grow?’ She took the microphone to Nimi and my baby shouted, ‘water’. The other parents at the event were pleasantly surprised. They clapped and cheered. On the 2nd of March, 2018, I attended the spelling bee event in her school and my daughter took part in spelling words.

Amazing, I must say because Nimi is still unable to talk clearly and she is fully dependent on others to do most things, like sitting, standing using her hands and eating. But as her parents, we have decided to focus on the things that she can do while seeking therapy for the things she cannot do.

If we had decided that Nimi will not go to school until she was able to talk, use her hands, or walk, she may still be at home, unlearned; not fully able to engage her world.

It is true that having a child with special needs changes your life a great deal but it also gives you the opportunity to write a beautiful story out of a seemingly hopeless situation.

March is Cerebral Palsy Awareness Month and March 25 is Cerebral Palsy Awareness Day, I will like to share a few things with us:

  • Cerebral palsy is the most common childhood physical disability with over 17 million people worldwide
  • In a study conducted at Lagos University Teaching Hospital, it was found that cerebral palsy affects 1 in every 90 children born in Nigeria today.
  • It is caused by a brain damage that may occur during birth, after birth or the early years of a child’s life
  • It affects the muscles, movement and coordination of the affected person. Therefore, some children are unable to walk, use their hands or sit upright. Some children may be unable to speak and for some others that can speak, speech may be unclear.
  • People with cerebral palsy are not dangerous, you do not need to run away from them. You can just say hi!
  • It is noninfectious and therefore you can shake, hug and speak to people with cerebral palsy
  • Having cerebral palsy does not mean a person is unable to hear, listen and learn.
  • A child who has cerebral palsy and cannot speak or use his/her hands can also learn under the right conditions
  • Every child has a right to education. Every child has a right to go to school.

Source:https://guardian.ng/features/inclusive-education-for-children-with-disabilities/

Some Nigerians think kids with disabilities are demonic –Mother of five-year-old with cerebral palsy

Bukola Ayinde is the mother of a girl with cerebral palsy allegedly abused by her therapist. She talks about the current state of her five-year-old daughter among other issues with GBENGA ADENIJI

What is the current condition of your daughter with cerebral palsy captured in a CCTV footage that went viral on the Internet in 2016 while being allegedly assaulted by her therapist in school?

My daughter, Nimi, is a five-year-old girl with cerebral palsy; apart from that, she is fine. Judging by what she has been through, I would say she is indeed a strong girl.

 

What further steps did the Medical Rehabilitation Therapist Board of Nigeria take after the matter went viral?

Well, they felt I was trying to put them in a bad light and thereafter, I didn’t get any other communication from them. Our lawyer wrote the board a letter asking them to give the US Consulate some documents but they replied that the right department would do it but no department got in touch with us. I was informed that the ministry of health set up a panel to investigate the matter but the outcome of that panel has yet been made available to us.

Some people petitioned the US embassy over the matter when the therapist reportedly travelled to the country. What did the embassy do about it?

The US consulate contacted us. They said they would make their own enquiry. Later on, I was informed that since she was no longer in the United States, the matter was no longer within their jurisdiction.

Do you think justice has been served on this matter?

The matter has not been handled properly by the appropriate authorities in Nigeria. Nevertheless, justice for me is that that the lady in question is not allowed to work with vulnerable people. For now, that has been achieved.

Does your daughter still undergo therapy and attend school?

Yes, my daughter has her therapy sessions three times a week. Her therapies are conducted at home; in the sitting room. I sit in for her sessions and when I am not available, her caregiver sits in for her session. She is not left alone with her physiotherapist.  After the incident with her former physiotherapist that took place at her school, I withdrew her from school. I decided to undertake home school her. I did that for some time before I was advised by a friend not to allow one incident to discourage me from allowing my daughter to go to school with her peers. I decided to give it another chance, though I was very skeptical. I am glad I did. She is doing very well. She has friends in school and she is an above average student. That for me is amazing because we were told she may never be able to learn.

 

As a mother of a child with special needs, what would you say is responsible for the abuse of vulnerable children?

Generally vulnerable children are easy targets of any form of abuse. They cannot defend themselves. A child, who is non-verbal, will not tell you that he/she has been beaten or sexually assaulted. Unless you discover by chance, it may go unnoticed.

When dealing with children with disabilities, abuse can come in diverse ways. In Nigeria, some people believe that children with disabilities are evil and demonic. Some say that parents, who have these children, have done some wrong things and they are being punished.

When parents lock a child up in the house because the child has disabilities, that is a form of child abuse. Some children with disabilities are not allowed to go to school, get medical help or interact with anyone outside the home. That is also a form of child abuse.

Another form of abuse that we don’t often talk about (as much as we should) happens within the walls of some religious centres.

Children with disabilities are termed demonic and are made to undergo certain inhumane forms of deliverance. Some religious leaders chain children to the ground and beat them asking the helpless children to denounce any form of association with demons. Some starve the children and literarily wait for them to die.

Another area I would love to point out is in the area of professional care for children with disabilities. Nigeria does not have a good number of professionals in physiotherapy, occupational therapy, speech therapy and paediatric neurology. Therefore, a lot of quacks have filled the gap. This has caused a lot of mismanagement of disability cases. The government parastatal in charge of managing rehabilitation therapists need to come up with a better strategy to sanitise the system.

How can parents know if their child is being abused?

As a parent, you have to be very observant. Abuse can come from anywhere – the school, at home, in the church, among friends and even within the family. Make it your business to study your child. If you are observant, you will see the signs. In my case, though my child was non-verbal at the time, she became withdrawn. Before the period of abuse, she would smile at people and make friendly facial gestures. All that was not there anymore. There were some days in the morning when I got to her school to drop her off and she would start crying. That was a pointer that something was wrong but it never occurred to me that her physiotherapist was assaulting her.

What role do you think government can play in checking child abuse especially with regards to children with disabilities?

There is a prevalence of ignorance in our society about children living with disabilities. Some people do not consider them as normal human beings. The fact that a person has developmental disorder or a disability doesn’t make them abnormal. They are human beings like you and me. They should be accorded respect and dignity.

The government needs to sensitise the public to change the current social perception of children with disabilities. The government shouldn’t delay in signing into law the disability bill. When the government provides medical and rehabilitation centres where children with disabilities can be cared for adequately, some form of child abuse will be reduced. Cases of child abuse that have been reported to the authorities should be investigated and the matter properly handled to serve as deterrents to others.

What is the focus of your newly formed initiative on kids with special needs?

Diary of a Special Needs Mum Initiative was founded based on my experience as a mother of a child with cerebral palsy living in Nigeria. The journey has not been easy; it is like walking through a maze. You are trying to find the best way to help your child. It is almost like you against the world.

You have to adjust your financial budget to accommodate the medical and therapy expenses your child will require. You need to set aside money to buy certain rehabilitation equipment that your child will need. You need to look for the right school for your child. The family needs to guard themselves against social stigma. In a lot of cases, the fathers are no longer on the scene.

My initiative was formed to encourage and support mothers who have children with disabilities with a focus on cerebral palsy.

We also propagate the need for inclusive education for children with disabilities. The fact that a child has cerebral palsy doesn’t necessary mean that a child has learning disabilities. When you put the child in a special school, how do you want to integrate him/her into society? There are no special universities, no special working environment and no special countries. My child has cerebral palsy, she was categorised as a stage five (being the highest level) based on severity yet, she is doing very well in school.

We also educate the public about disabilities. I strongly believe that if we demystify disabilities, then we can make progress in their management. I write articles for newspapers and online magazines on disability and related issues. I am having a book presentation next month, April. I have written three story books to teach about disabilities with a focus on cerebral palsy. They would also teach children to show love and empathy to children who are different from them.

Source: http://punchng.com/some-nigerians-think-kids-with-disabilities-are-demonic-mother-of-five-year-old-with-cerebral-palsy/