Wednesday, December 31, 2014

Thank You

I cannot believe it’s been 365 days. I remember starting out this blog on this day last year, just because I had to start before entering 2014. And that 2014 is rounding up already... Hmmmnn
How was the Christmas holiday? I’ll like to wish you a Merry Christmas in arrears. I hope you enjoyed it. I also hope you had a good year; I know I did. And I hope you learnt something on the blog.
I want to thank everyone that has followed this blog or stumbled on it once. You are the reason I am glad I started a blog. I want to thank all those that commented on posts or sent me personal emails. I’m very grateful for the feedbacks. I want to thank all those that shared my blog on Facebook, Twitter and other social media platforms; some of you sent the link to your friends. God bless you all.
In 2014, I was a rookie blogger; I believe 2015 will be better. At one year old, I should start attempting to be a veteran. I should therefore thank you for bearing with me this year. I’m working on “stepping up my game”. It is my desire to serve you well, and I promise to work harder at it.
So today December 31, 2014 I look to 2015 with great hope and expectations and ask you to come along with me. This hope will drive us in the New Year.
I wish you a Happy New Year in advance.

Thank you,
Adelola Edema
2014

Friday, October 31, 2014

Have you heard about Temple Grandin before?

I promised to put Temple Grandin story up before the end of October, so this is it...

Sometime in 2010, I stumbled on a movie called “Temple Grandin”. The movie was a biography of a woman, Temple Grandin, living with autism. It was inspiring for me, mostly because as a support worker in a centre for children with autism, it stirred up hope in my heart for the children I worked with at the time. It was proof that there was hope for recovery, as the story was about a living person who in spite of the limitations of autism was a doctor of animal science, a consultant to the livestock industry on animal behaviour, an engineer, and an autism advocate.

Fast forward to 2012, a parent asked me if there was anybody on d spectrum that she could read about. One name came readily to my mind; Temple Grandin. So here I am sharing the story of this amazing woman living with autism, and has been able to make the most of life in spite of the disorder and its effects.


                                                      Image gotten from wikipedia.com

Temple Grandin was born on August 29, 1947 in Boston, Massachusetts, to Eustacia Cutler and Richard Grandin. When she was two years old, she was diagnosed with autism.  Her mother placed her in a structured nursery school. Temple Grandin suffered delayed speech, which is a typical sign of autism. After a doctor suggested speech therapy to her mother, she hired a nanny who spent hours playing turn-taking games with Temple and her sister. She eventually started talking at age four.

Temple went on to primary school, where she says she had supportive mentors. She had a rough experience in middle school and high school because of her poor communication skills. She recounts that it hurt her then when other students ridiculed her. They referred to her as “tape recorder” because she used to repeat herself constantly.

Temple Grandin went on Franklin Pierce College, where she obtained a bachelor’s degree in Psychology in 1970. She later obtained a master’s degree in animal science from Arizona State University in 1975. In 1989, she earned a PhD in animal science from the University of Illinois.

Although Grandin was initially diagnosed with Brain damage, her mother decided to find the help she needed. Now she is considered one of the most successful people with autism. She is an inventor, as she invented the “hug box” which is a device that can be used to calm a hypersensitive person, usually a person with autism, by providing deep pressure to the person. She has authored many books including Thinking in pictures: My life with autism, The Autistic Brain: Thinking across the spectrum, The Way I see it: A Personal look at Autism & Asperger's, Emergence: Labeled Autistic, Sensory Challenges and Answers, Different not less: Inspiring Stories of Achievement and successful employment from adults with Autism, Asperger's, and ADHD, and so many other books on autism. She has also written books as an animal scientist, such as; Animals make us human, Genetics and Behaviour of Domestic Animals, Improving animal welfare: A Practical Approach, Livestock Handling and Transport, and many more books. She has also authored many articles along these lines.

According to her biography on her website, Temple Grandin “is a designer of livestock handling facilities and a Professor of Animal Science at Colorado State University. Facilities she has designed are located in the United States, Canada, Europe, Mexico, Australia, New Zealand, and other countries. In North America, almost half of the cattle are handled in a center track restrainer system that she designed for meat plants. Curved chute and race systems she has designed for cattle are used worldwide and her writings on the flight zone and other principles of grazing animal behavior have helped many people to reduce stress on their animals during handling. She has also developed an objective scoring system for assessing handling of cattle and pigs at meat plants. This scoring system is being used by many large corporations to improve animal welfare. Other areas of research are: cattle temperament, environmental enrichment for pigs, reducing dark cutters and bruises, bull fertility, training procedures, and effective stunning methods for cattle and pigs at meat plants.”

Temple is an autism advocate, and she is very much involved in autism awareness. She talks about her own experiences and challenges as a person living with autism. She talks about her anxieties, sensory processing difficulties, challenges with social interaction, and most importantly how pictures and not words are her primary language. These are similar to the experiences our own children with autism (as parents and care-givers) face.

   Image gotten from www.biography.com

For me, Temple Grandin’s story gives me hope and inspires me. As long as I don’t give up on any child, and as long as I give my best to each child; the limitations that autism present can be made to work to the child’s advantage. I hope Temple’s story does the same for you.

Sunday, October 19, 2014

Letter to Bubu

There are just a few people that I have met that "literally" blew my mind. From the first time I saw this woman on WWTBAM (Who wants to be a millionaire) on TV and I thought "Wow,this woman is pretty"; then I met her at GTB autism seminar in 2011 till I finally heard her story in June 2011 and up till now, my respect and love for her just keeps growing.
October 19, 2012; she wrote a letter to her son on his birthday. It blessed my life and I know it can bless yours too. So I got permission to share it then. And I want to share it again with you.

"An open letter to Bubu from his mummy on his 6th birthday.

Hey Baby, it's your birthday today and am almost moved to tears taking a trip down the path you've come. For a kid so young, you have lived a hundred years beyond your age and all with a smile on your face, eyes twinkling and a rich laugh to go.

We knew you were definitely going to be a special child before you were born, you see complications from multiple surgeries had damaged mummy's reproductive organs and the doctors had said you couldn't be birth (not without assisted reproductive techniques anyway but the Great Man above had other plans. )
The name "CHUKWUEBUKA" was chosen years before the miracle that was you came along, before even daddy came along (- I will tell you a lot more about the man your father is when you are a bit older). I was convinced despite what the doctors where saying, that God was gonna show what a Great God He is. The world was in need of Joshua's for this generation and I believed that the gift that would be you would be one of them.

Fast forward a couple years, soooooooooo much more than I can recount here now has gone on, mum and dad are together now (a crazy enterprise for dad really) and are trying to workout a path to you through IVF when you burst through to the shock and amazement of everyone, the doctors at the reproduction center, us , everyone but God who had decided you were coming and not through IVF. Initially we were skeptical, it couldn't be.... how was it even possible???? But alas weeks after we could confirm you were there alright, smack in the uterus, how you got there, till today we would never know and honestly don't care. You were there and that was all that mattered.

You made landfall, six years ago to the sound of grandma and her sisters singing at the top of their voices in the hospital to the amusement and I dare say the irritation of the nurses and other patients. But there you were - tiny, breathing, crying, brand spanking new and I would never forget the rush of emotions. Daddy was right there sweating profusely, looking like he was the one that they had cut you out of, lol. What a precious gift???? What a unique child, conceived on Avenue Tedesco, born on Hospital Drive and bred on Ademola Close, who can beat such an exotic start???

Your first years were better than we could have expected as new parents. We poured through the books trying to keep up, checking up on monthly milestones and charting your progress and you exceeded them each month, you were used as the yardstick to measure the other kids around. You held ur head, crawled walked and started talking. I remember I was soooo pained your first words were dada and I started drilling you everyday to see if you would switch to mama - you didn't but on Christmas day while in church 2 months after your 1st birthday and months after you started saying everything but that, you finally called me mama, very loudly to the amusement of all.

Even as a kid you showed a great love for music and would run around the house singing rhymes. But a dark cloud appeared to be looming, it started with repeat bouts of upper respiratory tract infections, we were told it was expected, you sucked your fingers so as a toddler you were exposed to lots of stuff that could cause infections via the sucking, hmmm, ok. We took antibiotics for that, lots of it. Then it was chronic constipation, dietary change wasn't cutting it, they put you on daily laxatives, it didn't cut it still, we got worried, then the straw that broke the camels back, you received a seemingly harmless shot and got ill, we went on admission, came out and you started stuttering, then struggling to speak, then you lost all speech totally. Like it wasn't enough already, the wardrobe door unhinged and landed on your head in a freak accident that still defies explanation till date. Immune dysfunction, mecury toxicity, head trauma, hypothyroidism, mitochondrial dysfunction, you name it, we have known it. It was the commencement of a journey that eventually led us down the rabbits hole to regressive autism.

The day you finally got officially diagnosed, almost 8 months later following a lot of drama, you and I shared a moment I want to share with you. At this point, I had started working with you personally, not knowing much, all we knew was we needed to keep your brain stimulated while awaiting diagnosis and we did. That night I lay in bed with you and had a conversation that went like this " Bubu, am sure you heard what the doc said this afternoon, but what the doc didn't know is that you are not just an ordinary boy. You already made it into this world when it had been said you wouldn't, you won that fight. You've got another battle on your hand now that you need to gear up for. I promise to fight with you and for you with everything I got but to do that you have to officially appoint me your arbiter be4 God, so I can have the authority to speak on your behalf till your able to, if you agree to this, shake my hand and it will be the sign of our agreement".

To my greatest surprise, you got up from the bed, knelt over me, shed a tear from just your left eye, brought your hands out and shook my hand. If there was ever a time I would have broken down, it would have been then, but you still had more in you. You held my hand and said very audibly, in a voice I hadn't heard in over 8months, the word - APPLE. I was gobsmacked, this was one of the words we had been working with you on and wasn't even sure you were paying attention to it and you had just said it, very clearly. That for me was all I needed. It was for me, the confirmation that we were yet again going to win another battle.

We knew it wasn't gonna be easy, but we knew the victory was already ours and pledged to do all we can to make sure we got you all you needed and then let God do His bit. Fast forward again to date and what an adventure it has been. I have never known anyone work as hard as you have in life, God's grace has just been upon you causing you to make ridiculous progress despite continuos challenges. Today on your 6th birthday, we are so close to the finish line, it is so tantalizingly close, we can see it.

We are buckling down for that final push, you are ready for it and with God on our side we've made it already. I write you today publicly cause I want you to be able to come back to see the day and time I knew for sure we were home free. What ever lies ahead, WE ARE HOME FREE. We love you beyond measure son and celebrate you with the world today. We are so proud of you, our little musician, it,maths/puzzle guru. The world is yours to conquer and conquer it you shall. May God continue to bless and increase you in all good things today and always.


Top of Form

HAPPY BIRTHDAY BUBU!!! (Oct 19)"

Wednesday, October 8, 2014

GET UP and HURRY

“After the wise men had gone, an angel from the Lord appeared to Joseph in a dream and said, "Get up! Hurry and take the child and his mother to Egypt! Stay there until I tell you to return, because Herod is looking for the child and wants to kill him."  That night, Joseph got up and took his wife and the child to Egypt” (Matthew 2:13-14)

Hello everyone. I've missed you, and I hope you've missed me too.  Anyway, I’m back and today I’ll be writing based on a scripture from the Bible.

Recently I was at a training in Johannesburg, South Africa. It’s called “Hands on Autism”, organized by Autism South Africa (a:sa) and Johannesburg Hospital School (a school for children with autism). We had the opportunity to see different children on the spectrum, with ages ranging from 3 to 21.  Of course the children were in different classes based on their ages and level of support needed. We had the opportunity to observe the “morning ring” (circle time) of a class that had children of ages 5 and 6. That experience inspired this article.

Back to the Bible story; Jesus had been born and I’m sure his parents were happy. In fact, one night some wise men came visiting and brought wonderful gifts for their new born baby. How glad the parents would have been. But that night, Joseph was told that someone wanted to kill his son (his precious child). Does that not sound like when a parent hears that his/her child has autism, or any form of special needs? What could he or the child have done to deserve this judgement of death? What could a parent or the child have done to deserve autism?


Well, Joseph didn't sit there crying and wishing away the judgement. He had to do something. He got up and hurriedly took the child to a safe place. That seems exactly like the story of the parents of the children we saw in Giraffe class in JHS. These kids were pretty independent. It was amazing watching them communicate using words and sign language. They showed good turn-taking skills, as each child had to wait for his/her turn. The truth is that at their age, they still had some challenges caused by the autism, but they had really come a long way from how they were when they resumed at the school for the first time. This experience taught me that EARLY INTERVENTION CAN NEVER BE OVER-EMPHASISED.

So Dear Parent, I know it might be hard to take in the news of your child’s autism. In fact, you think I can’t imagine how you feel right now (Maybe I can’t). But can you GET UP and HURRY? You don’t have to be in Lagos or Abuja to get help for your child. Well, if it means going there or anywhere that has a center to find out how to start helping your child, then by all means, GO. But don’t sit there and wish away autism. Do something.

Sometime this month, I shall share with you the story of Temple Grandin who was born with autism AND is now a doctor of Animal Science in USA. On October 19, I shall share “letter to Bubu” which was written by a mother to her child on the autism spectrum. These stories tell us about mothers who decided to GET UP and HURRY, regardless of the challenges they faced or how they felt. So please watch out for these stories.


You can like my FB page, Autism Gist with Adelola or follow me on twitter, @adelolaonautism. I shall be sharing pictures of my Jo’burg experience and tips that you might find useful... Muah

Tuesday, August 12, 2014

More about seizures

Now I feel like a Nollywood (or is it Ghollywood) producer, with this my part 1 and 2 posts. Please forgive my long posts. I wish I could make them shorter.

Anyway, today I'm continuing my gist on seizures. You can click here for the part 1 of this article, and learn what we have learnt earlier. Now I'll just give points on other things you need to know about seizures. Please read and comment.

  • ·         Seizures can be triggered by fever, so it is important to treat fever immediately, especially for a child prone to seizures. Please if your child has a fever; bathe the child with cold water. I can testify that it reduces the fever and prevents seizures. I learnt it at the seminar, and I believe it strongly. This is good for any child, even if the child has never had a seizure before.
  •  It is important to keep records of your child/ward’s seizures. This is important for diagnosis and treatment. Your record should include the time the seizure occurred, how the seizure began, how long the seizure lasted, the kind of movements that accompanied the seizure, if the child felt any warning signs, whether the child is sick, tired or stress. Record whatever else may be of concern to you.
  • Seizures can occur as a result of some medical problems, such as head injury, infection or health problem in the brain, brain tumor, low blood sugar, accidental poisoning, or drug overdose. This is why it is important to see a doctor before starting any medication. Please I don’t know if I can beg you enough, but please don’t do self medication. See a doctor.
  • ·        At the seminar, we were told that epilepsy does not affect IQ, although some people that have epilepsy may have average or low IQ. But it can affect learning. Depending on the frequency of the seizures, some children miss school often. The doctor advised that extra lessons, classes can be provided to help the child level up with the other classmates. This applies even to a child under Special Education.
  • ·         Before you say Adelola mentioned only EEG, I need to add that the neurologist may also order for a CT (Computerized tomography) scan or MRI (Magnetic resonance imaging) test. These help in diagnosis as well.
  • ·         Epilepsy is NOT contagious. The fact that you help a person with seizures does not mean you will have one or you will have children who are epileptic. Please do not let superstition stop you from being your brother’s keeper.
  • ·         In Nigeria, certain cultures have dangerous approaches to dealing with seizures. I heard of a child in Ile-Ife, Osun State, whose feet were badly burnt because her family had tried to use fire to stop her seizures. Please do not use fire to burn your child’s feet. We said earlier that you should not put objects in the child’s mouth during seizures. It does not help in any way; rather you may end up spoiling the child’s teeth, or even harming the child.
  • ·         I’m afraid that I also have to add that there have been cases of death as a result of seizures/epilepsy. That is why it is important to take the cautions that have been stated in the previous article; loosen any clothing around the neck, turn the person to the side to avoid choking and don’t put any object in the person’s mouth.
  • ·         And most importantly, I must say that epilepsy does not stop the child’s life. The boy with seizures that I met is just like any other child on the spectrum. He loves to be loved. He has fun just like the other kids. Although he knows that he’s on medication unlike the other children, so he needs to sit down and take his drugs. That does not stop him from standing up afterwards and going to play. The seizures scare us, but we love him all the same. Love your child and let that love drive you to seek help for him/her.


I love you, I love your child... And together we will fight the limitations of autism or any other disorder. *muah*

I would appreciate comments. Please read, comment, and share. Thank you.

Monday, August 11, 2014

CAN WE TALK ABOUT SEIZURES?

I heard quite early in my autism journey or experience that some children with autism have seizures. But I didn’t meet anyone like that for a long time. Sometime last year, I finally met a child on the spectrum that suffers from seizures. Witnessing this boy’s fits made seizures very real to me. But I still did not understand what the seizures were about. Fast forward to March 2014, I was privileged to be part of the “World Epilepsy Day” seminar organized by Society for Neurology and the Mental Health Department of Obafemi Awolowo University Teaching Hospital, Ile-Ife, and I was privileged to learn a lot. So here I am bringing the gist to you about seizures; what it means and how to handle it.

According to an article by Autism speaks, studies suggest that about 15 to 30 percent of people on the spectrum experience seizures. Seizure refers to abnormal movements or behaviours that happen as a result of unusual electrical activities in the brain. The most common type of seizure is the one that involves jerking. I grew up referring to that as convulsion, and that was what I recognized as seizure in the boy I met last year. But now I know that there are other types of seizures. When seizures recur, especially for no identified reason, it is referred to as Epilepsy.

There are different types of seizures. As I said earlier, the most common is the one that involves jerking. The whole body may jerk or just a part of the body may start jerking. But some seizures are not as dramatic. Seizures can be as mild as the individual perceiving a strange smell to the severe case where the individual will fall down and start jerking. Other seizure signs include;
·         A period of unresponsiveness, which may lasts for about 10-20 seconds. It may seem like the person is daydreaming or aloof. In the video we watched at the seminar, the guy just stopped responding to the other guy talking with him, and just kept walking. The person becomes alert afterwards.
·         Repetitive blinking, eyes rolling, head bobbing etc.
·         There may be sudden lose of muscle tone. The individual may go limp and fall down.
·         The person may make a loud sound or just go through the fit quietly.
·         Numbness in some parts of the body, or feeling like one is being pricked by pins.
·         Change in breathing or heart rate.
·         Some people that have seizures may sense it coming before it actually starts. This is referred to as aura.
Seizures can occur in babies, children at any age, and even in adults; the causes may just vary for different age groups. For adults, it might be a sign of stroke. When your child has seizures, it is important to see a neurologist. The neurologist will most likely order an electroencephalogram (EEG), which is a non-invasive process that helps to monitor activities in the brain. The neurologist will then analyze the brain activity patterns that the EEG measured, to determine if the individual is having seizures.

For children with autism, some signs of seizures may be mistaken for odd behaviour or vice versa. Children with autism can show staring episodes or stereotypic movements which are not seizures, it is therefore important that one sees a doctor and conduct the test in order to know what exactly is being exhibited.

Epilepsy cannot be cured, but seizures can be controlled by antiepileptic drugs. These will be prescribed by the doctor. At the seminar, a staff of Novartis (they produce an antiepileptic drug), came to talk to us. He told us that it was good to buy “controlled release” versions of antiepileptic drugs. Controlled release drugs just reduce the number of times the individual has to take the drugs per day (at least that's what I remember him saying). I must testify here that the child I know on the spectrum has been on antiepileptic medication, and yes we and his parents pray for him all the time. When I first met him, he used to have seizures a lot. But the episodes have reduced greatly. We can go two whole months without a seizure episode. So please as you pray for your child, still follow the doctor’s orders and give your child prescribed drugs. Don’t just say “I read about a drug for seizures” and then you’ll start using it for your child. Make sure the doctor tests the child and prescribe the drugs and tells you how to administer it.

For some individuals, drugs don’t work. The doctor may advise surgery for extreme cases, or the individual may be placed on a special diet. This special diet is called “Ketogenic diet”.

When an individual around you has a seizure (especially the jerking kind), what should you do? Number 1, DO NOT PANIC. Place the person on the floor in a safe area. Remove objects nearby. Loosen any clothing around the neck or the head. Please do not put anything in the mouth or between the teeth. And do not attempt to restrain movements. Turn the person to the side, so that in case there’s vomit, he/she won’t choke.

Call the doctor or rush the individual to the hospital if the person; has sustained an injury during the seizure, has never had a seizure before, has a known heart condition, or might have ingested something poisonous. If the seizure lasts for more than 5 minutes or the person has had about 4 episodes in the day, please talk to a doctor. This is important so as to avoid any danger.

This is not all. Even though I know some people will consider me to be like Nollywood, with my part 1 and 2 articles, I'll still have to put up a part 2. This article is already too long, and if you are like me, you will stop gaining anything from the post when it's long. So tomorrow, I shall put up a sequel. It's very important for you to read it, there's still a lot to learn about seizures.

I love you and I hope I've not bored you. I'll appreciate comments, even if it is to correct something I've read.You can also send me an email adelolaedema@gmail.com Thanks

Thursday, June 26, 2014

Ninety-Nine or One?


Wow! It’s been such a long time I posted here. I’m really sorry for the looooong delay (that sounds like tautology right? At least in my ears)! I've really missed this blog. And I repent today. You won’t have to wait long for subsequent posts (I pray).

“Then Jesus told them this story: If any of you has a hundred sheep, and one of them gets lost, what will you do? Won't you leave the ninety-nine in the field and go look for the lost sheep until you find it? And when you find it, you will be so glad that you will put it on your shoulder”. (Luke 15:3-5. Contemporary English Version)

Many parents tell the story of their child being rejected by a school because the child has autism (and may have been displaying some challenging behaviours). I remember being angry the first few times I heard such stories, but overtime I realised it was better the parents found a school that would accommodate their child than insist on keeping the child in a school that may be hostile to the child, which won’t help anyway.

Sometime recently my boss and I considered going round mainstream schools around our community to create awareness on autism and probably organise trainings for the teachers, so that they can handle any child they suspect may be on the spectrum.  At the first school we went, the Headmistress did not mince words in telling us she was not interested in any awareness or training, as she had no plans of accepting any child with special needs. She was really angry that we even considered coming to her school for training. Needless to say, we left that school extremely sad. We were sad because we feared for any child in that school that may be on the autism spectrum, or may have any other related disorder.

In the scripture above, Jesus told the story of a shepherd that left ninety-nine sheep behind to find a missing one. And I ask myself if as shepherds, either as teachers or parents, would we have gone out of our way to find that ONE?

I believe strongly in the idea of “no child left behind”. Some people in Northern Nigeria are campaigning for education for the girl-child. Some of us are campaigning around the world for education for children with special needs. In Nigeria, at least, there are still some families that keep their children with autism locked up because they think the child cannot go to school or the child is a waste. Please that child can go to school. There are mainstream schools here in Nigeria that provide special education and learning support for children on the spectrum. And there are special schools or centres that provide special education to meet the needs of these children and to help them develop skills that they need to achieve independence.

I hope that with the autism awareness campaign going on in Nigeria now, school proprietors will be encouraged to provide quality education for children with autism and children that have other types of special education needs. If autism is as common in Nigeria as reported, there is a need to provide education for the children on the spectrum that are around us. Like the illustration in Jesus’ parable of the lost sheep, do we want to leave these children that we consider as different, without help? Do we want to leave them in a wilderness? I hope we all answer NO. If as a school proprietor, you want to help, you don’t have to just provide somewhere for them to go everyday. Employ the services of special needs teachers or send the teachers you have in your school for training. You must decide that you want to give them QUALITY education.

In our campaign for quality education for children with special needs, we would not overlook neuro-typical or regular children (children that do not have autism or related disorders). Although that shepherd left the ninety-nine to look out for the missing one, we are not saying “neglect other children”. No way!!! It’s actually not a question of “99 or 1?” What we desire actually is 99 and 1. A situation where regular children, male or female, and children with special needs can have access to quality education, regardless of the social class of their parents or their location in the country.


Thank you for reading... I’ll be back with more autism gist.

Wednesday, April 2, 2014

Happy World Autism Awareness Day

I wrote this for a friend's blog a while ago. Today is World Autism Day and it just seemed perfect to share this today. It's simple and can easily be shared.

A woman discovers that she's pregnant and she's happy. It may be the first, second or maybe tenth child she's expecting. Apart from the difference in experience, the fact that she's expecting to give birth safely is the same.
Some months later,a child (let's say a boy) is born and everyone rejoices. He doesn't look different from a regular child. The doctor and the parents have no cause to worry. He seems to grow normally; crawling at the right time, attempts walking at the right time etc. But then at 18 months, the mother notices that her child is not talking. It dawns on her that he didn't babble at 9 months and then she starts getting worried. She runs to the paediatrician and he says it's late development; boys sometimes develop later than girls. Her mind is put at rest for a while. But then she begins to notice other things; he doesn't seem to notice people around him,he does not play with the other children, and it seems he does not like to be touched, he avoids eye contact with people. She notices other strange behaviours; he flaps his hands, covers his ears, arranges things in a particular order, he does not point at what he wants but would lead a person's hand to his object of interest. She also notices that toilet training seems harder for him to grasp. She is getting more worried,but the doctor does not recognize that something is wrong.
Now he's almost 3 and things are not getting better, then the truth is revealed. Her son has AUTISM. How? Why? What did she do wrong? What did she eat when she was pregnant? Was it the age when she conceived? The doctor tells her that it's not her fault. Autism is a disorder whose cause is not known and is certainly not a parent's fault.
He tells her that Autism is a neuro-developmental disorder that affects a child's social, behavioural and communication skills. Some children actually talk and acquire some skills at the right time,but lose these skills before they are three. It is more common in boys than in girls,with a ratio of 4 boys to 1 girl. In the US, autism is found in 1 out of 88 people. Nigeria does not have documented statistics,but autism is getting more common around us...
The doctor continues to talk, but it's all a blur as she sits there crying and wondering what the future holds for her son. Will he ever talk? Will he be able to go to school like other kids? Will he live an independent life like other children? Different questions run through her mind and she has no answers.

The truth however is that her child can attain independence like every other child if she seeks help. He can go to school like other children. Therapy is available for children with autism in some states in Nigeria. And the different types of therapy available are to help the child attain maximum independence. The child's social skill can be developed, communication skills can be built and behaviour can be modified. And there's support available for parents now in Nigeria so that these parents and their children with the support of other parents and professionals, can fight the battle against autism. AUTISM does not have to stop a child's destiny.


For more information, you can join the Nigerian Autism community through Nigerians for Autism on Facebook. There is also a parent group in Nigeria called Parents Against Autism Initiative (PAAI). I also always tell parents that "google is your friend". The internet affords you the opportunity to get any information you may be seeking and find support in the international community. 

That's it folks. April is Autism Month,so this blog should be busy. I hope to share stories of parents that have had to deal with Autism in their kids. There will be a book review (you don't want to miss that) and so much more. Please follow me on twitter @adelolaonautism and like my Facebook page Autism Gist with Adelola. I'm sure you will learn a lot this month about autism.
And please read, comment and share o. Let's get this word out people.

Much love from me to you this Autism season... muah

Wednesday, March 12, 2014

How Can Others Be Involved

The challenges of having a child with ASD or a child with special needs can be overwhelming for parents. The challenges may be peculiar to each parent, but one thing that is constant is the need for support. Parents of children with special needs are seeking for care and support. They need to know that they have friends and family members that have their back. So let’s talk about how we can help.

·         You can go and help out in the house whenever you can. I know some mothers will appreciate some help in the house. It does not mean they cannot take care of their homes, it is just your way of showing that you are there and you care.
·         You can take all the children or maybe just the other children out sometimes. They are often stressed out raising that child and their other children. Siblings of children on the spectrum also deserve a beautiful childhood, and you will be contributing to that experience for them.
·         Go and babysit the children so that the parents can have sometime alone. Raising a child with autism is demanding and so some parents do not have time for each other and this has caused the break up of some marriages. Even couples that have neuro-typical kids feel the need for a break, how much more a couple dealing with their child’s disorder. I am very sure they will appreciate the gesture and labour of love.
·         Encourage them with your words. A call can bring comfort sometimes.
·         You can also give money when necessary. Therapy costs money and so some parents and caregivers will appreciate financial support.
·         It will be nice to have your children go over to their house to play. This will help to build d child’s social skill.
·         Helping them with new information can be very helpful. If you have any news that will benefit them, please share it with them.
·         Stand up for them and their child when people speak ill or rudely of them. People are very mean to children with autism and their parents. We need more people standing up for them.
·         Show them and the child love and care.
·         Be an autism advocate. There is a Disability bill in the House of Representatives in Nigeria. You can join your voice with ours to ensure that it is passed.
·         Most importantly, pray for them and their children. The place of prayer cannot be overemphasised. We are sometimes limited as humans, but prayer allows us to invite divine intervention or help where our own strength cannot help. Sometime ago, a boy at the centre I work now, needed to do eye surgery to remove cataract from his eyes. His parents did not have the money and we could not help either. We just kept praying to God to send help. And God miraculously provided the money for the surgery. Your prayer can also be for God’s comfort for the family. Whatever you pray for does not matter, but please pray for them.
Some people do not have relatives or friends with children on the spectrum, but they can also be involved. You can give to organizations that cater for these children. Another way to help is to spread the awareness. You have no idea how mentioning autism somewhere will help someone who needs to hear about it. School owners can also decide to provide education for these children. Every child has a right to education including children living with autism.
Also I believe that with your help, an adult with autism may be saved from discrimination, and allowed to get a job in a work place of his/her choice.

Thank you for listening. Till our gist continues next time... muah

p.s: In another news, GTB is organizing an Autism awareness seminar and Behaviour Clinic later in the month. The Behaviour Clinic will hold from March 24-28, while the Autism seminar will hold on the 31st of March and 1st of April, all in Lagos. Check out http://www.gtbank.com/autism to learn more and register for it.

Tuesday, March 11, 2014

Signs To Watch Out For And What To Do

When people ask me if there’s a particular look with which one can identify a child on the autism spectrum, I just tell them “NO”. In fact, I sometimes say that if there was any look for autism, then it will be called “CUTE”. I have worked with quite a number of children on the spectrum and I can testify that they are cute. I’m sure that if you have met any child with autism, you will agree with me. But we can’t assume that every cute child has autism. It will be amusing to see people looking at every cute child as having autism. lol.
So what then should we look out for? And what should we do if we suspect that a child is on the autism spectrum?
As a child grows, there are certain gestures that one should expect. They are communication, social, and cognitive development milestones. For some children with autism that show symptoms early, parents have eventually found out that these children did not show the expected gesture with each milestone. So the early signs to watch out for include;
·         No big smiles or other warm, joyful expressions by 6 months
·         No back and forth sharing of sounds, smiles or other facial expressions by 9 months
·         No babbling by 12 months
·         No back and forth gestures, such as pointing, showing, reaching or waving by 12 months
·         No words by 16 months
·         No 2-word meaningful phrases (without imitating or repeating) by 24 months
But some children do not delay in development, but lose acquired skill any time before age three. Therefore any loss of speech, babbling or social skills at any age before age three may suggest autism.
As the child grows certain symptoms or signs become more obvious. So other signs to watch out for include;
·         When a child does not play with peers, but will rather play with self
·         When a child does not give eye contact
·         When a child does not respond to name or you suspect that the child is deaf by 12 months
·         When a child is hyperactive and still does not play with peers
·         When a child will rather draw your hand to his need than point to it or tell you verbally
·         When a child displays ritualistic or obsessive behaviour (e.g. arranging things in order, opening and closing of doors etc)

As a parent, if you read this article and you suspect that your child may be on the autism spectrum, maybe your child shows some of these symptoms, what should you do?
1.      Speak to a doctor about your fears. We established in the previous article the importance of getting a doctor’s diagnosis. You don’t want to address the wrong disorder, so please, it is VERY important that you talk to your doctor (especially a paediatrician) about your fears.
2.      Get online to browse on any new information on autism that can help you or the doctor. In Nigeria, we have heard of some children that were diagnosed late because the doctor concluded that it was “late development” and the mothers just stopped there. Please o, Google is your friend. Going online will arm you with information that will help you and the doctor.
3.      Get therapy for your child. Even if the child does not have autism, the signs have to be addressed. A therapist addresses the symptoms. Knowing the exact condition helps the therapist to tailor the therapy to address the particular condition. But while you wait for the doctor’s report, please get the right therapy for your child. The different interventions/therapy may include Applied Behaviour Analysis (ABA), Speech therapy, Behaviour modification, Physical/Occupational Therapy, Sensory Integration, Autism Spectrum Adaptive Program (ASAP), Biomedical (which can include change of diet, medication etc). The therapist or support worker will tell you the particular treatment that is applicable to your child or that he/she offers. In Nigeria, there are Special schools or centres in different parts of the nation that provide special education for children living with autism. Some Mainstream/Regular schools also provide special education for children with autism. So you can decide what kind of service you want for your child, and go for it. There will be another article on what you should look out for when putting your child in a regular school.
4.      Find support! This is very important. You can’t handle this alone. There are other parents that have been where you are and they will willingly, gladly and lovingly support you. There is a Facebook group called “Nigerians for Autism”, there are parents and professionals there that can provide support for you. There is also a parents’ support group in Nigeria called Parents Against Autism Initiative. If you send me an email (adelolaedema@gmail.com), I can link you up with them.
5.      Pray for your child and yourself. Prayer is very good, but it loses its essence when people pray only, without finding professional help for their child. While you are praying, please do the other things that have been suggested above. May God help you.

With all my love, I wish you all the best... Muah

Autism is not... (Cont)


Sometime in 2012, I heard about a girl whom they claimed had autism. They described the symptoms and I didn't think it was autism. I asked them a couple of questions and by the time they answered, I knew it could not be autism. Eventually, I asked the mom what the doctor told her, and she told me the doctor said her child had “microcephaly”. Why then was she claiming autism? She said she was told by other people that it was autism. That brings us to another gist of what “autism is not”.
There are other special needs conditions that can affect a child. Autism affects the child’s social skill, communication skill and behaviour. These three domains have to be affected. And you cannot just conclude that a child has autism because everybody is talking about autism. So let’s continue by saying, Autism is not...
Microcephaly: I’ll start with this as it’s in our introduction. Microcephaly is a medical condition which the circumference of the individual’s head is smaller than normal because the brain has not developed properly or has stopped growing. It can be present at birth or it may develop in the first few years of life. It is often caused by genetic abnormalities that interfere with the growth of the cerebral cortex during the early months of foetal development. Abuse of drugs and alcohol, toxic chemicals, viral infections or untreated Phenylketonuria (PKU) are other causes of Microcephaly. Symptoms include intellectual disability and development delays.
A typical brain and the brain of a person with Microcephaly
Down syndrome (DS): DS unlike autism, shows on the face of the individual. It is also called Trisonomy 21 because it is caused by the presence of a third copy of chromosome 21. A child with Down syndrome experiences both physical and mental developmental delays. DS symptoms include smaller overall stature, flat facial profile, thick epicanthal folds in the corners of their eyes, protruding tongues, which is due to their smaller oral cavity and muscle hypotonia - low muscle tone.

Attention Deficit Hyperactivity Disorder (ADHD): Although it is possible to find some children with autism that also have ADHD, it is a completely different disorder. As the name implies, a child with ADHD is inattentive and hyperactive. The symptoms of ADHD can be seen generally in children, but it may become a source of concern when these behaviours occur too often. Because a child with ADHD often finds it difficult to sustain attention during tasks or play and does not often follow through on instructions, school work and other activities, it serves as a major challenge in academics. A parent that is concerned should seek a doctor’s diagnosis. The school too may advice the parent to see a doctor, but they should not just treat the child as naughty.
Fragile X Syndrome: Fragile X is the most common inherited form of intellectual disability. This is a genetic condition which involves changes in part of the X chromosome. I believe we remember, at least faintly, X chromosome from our high school Biology. Do you remember XX for women and XY for men? X and Y chromosomes are referred to as sex chromosomes. The mother donates the X chromosome to all her kids (that is what she has to give anyway) and the father donates the X chromosome to his daughter and Y chromosome to his son. So Fragile X is caused by a fragile site on the end of the X chromosome which appears to be breaking, although not quite separated. It is more common in males than females. As earlier said, it causes intellectual disability in the individual. An individual with Fragile X may also show symptoms of autism. Unlike the usual ASD, there are certain physical features that accompany Fragile X. These may include a long narrow face, prominent ears, high palate, flat feet, and soft velvety skin. They have low muscle tone which may make them seem cross-eyed, and with slack facial features. Some older males may have large testicles. They may also show symptoms of ADHD. For a child who is suspected to have autism, it is good to test for Fragile X, so that the right treatment can be administered.

Intellectual Disability: A person is said to have intellectual disability (ID) when the person shows limitations in intellectual functioning and adaptive behaviours. It is characterized by a below average intelligence or mental ability and a lack of skills necessary for day-to-day living. Symptoms include poor memory skill, delayed language development, inability to connect actions with consequences and may experience difficulty in mastering basic skills like toilet training, feeding, bathing or dressing. Children with different disorders like autism, Down syndrome, microcephaly, fragile X etc, may show intellectual disability, depending on the severity of the disorder. There is no known cause for ID except in a few cases (just about a third of the diagnosed people).
Finally, there are other Pervasive Developmental Disorders (PDD), Rett syndrome (RS) and Childhood Disintegrative Disorder (CDD). Although these are Pervasive Developmental Disorders, they are not classified under ASD because they present different symptoms. Rett syndrome is characterized by normal early development, followed by loss hand skills, distinctive hand movement, deceleration of head growth, gait abnormalities, seizures, and mental retardation. The child loses many skills that have been acquired initially, including speech. RS is found in girls. CDD on the other hand can be found in both boys and girls. It is characterized by a normal early development, usually between ages two and four, followed by a regression and loss of skills such as receptive and expressive language, social skills or adaptive behaviour, bowel or bladder control, ability to play and motor skills. This regression can span from age two to ten and it can be so dramatic that the child notices the changes and comments on it. The child eventually shows symptoms similar to typical autism.
There are many other possible disorders that affect people other than autism. Therefore, the purpose of this article is for people to seek diagnosis from a registered doctor in a registered hospital when they notice the difference in their children. Do not conclude that a child has a disorder because other people say so. Autism is not a name for all developmental disorders or any disorder you don’t understand. A diagnosis is important so that one can know the right treatment to administer. How can you treat what you don’t know? Children with different disorders can get help. But how can the child get the right help if you only assume the problem? Please let’s do the right thing.


Thanks for reading my gist. Till we talk next time.... muah