April is All About Autism Awareness

Hello everyone! Happy New Month!
Today is April 1, the first day of the Autism Awareness Month in 2016. Throughout this month, there will be different activities for autism awareness in the media and around our communities, plan to be involved; share posts about autism, retweet autism tweets, tell people about autism or autism seminars you hear about. With more awareness comes more acceptance and support. Let’s get the word out about autism this month.

In Nigeria, I am aware of three activities happening tomorrow, April 2, for autism awareness in three different States;

In Lagos, there will be a compassionate walk for autism. We shall walk from the Guaranty Trust Bank at Town Planning to Jibowu and back (I am afraid of the distance already, but at least I am doing this for autism and I’ll shed some weight). If you are in Lagos, you can join us by 7am. Have you ever wondered how you can be a blessing to a child with autism, this is a good way to start.

                                                         

In Abuja, the Dew Drops Community Center it organizing an Autism Family Support and Stakeholders Forum. The forum's aim is to create autism awareness, and empower parents to become partners in their children's learning, advocates, advisors, and decision makers for their children. You can get details on  www.cacacademy.sch.ng .
In Port-Harcourt, there will be a walk for autism. Please join Blazing Heart Autism Center and other people as they walk for autism, at the Yakubu Gowon Stadium by 6am tomorrow.

Please follow @adelolaonautism on Twitter and like our Facebook page, Autism Gist with Adelola. I’ll keep you posted on any activity happening in Nigeria this month, in the autism community.


Happy Autism Awareness Month!

In Other News: It’s World Down Syndrome Day!

I promised last year that I will start talking about other disorders, apart from autism, this year.

I had wondered what disorder would be the first to grace the “In Other News” column (yes, it is a column on the blog *smile). While deliberating, I met an amazing child with Down syndrome, so much fun to be with, and I knew it had to be Down syndrome. And with today set aside for Down syndrome awareness around the world, it is a good time to do Down syndrome awareness.

First of all, what is Down syndrome?

Down syndrome (DS), also called Trisonomy 21, is a condition in which extra genetic material causes developmental delays, both physically and mentally, in a child. It is a genetic condition caused by the presence of a third copy of chromosome 21. High School Biology teaches us that for a child to be conceived, each parent donates 23 chromosomes each. But then, there can be a situation where a parent donates 2 copies of the 21^st chromosome; that child will be born with Down syndrome.

How can you identify an individual with Down syndrome?

Unlike autism, Down syndrome shows on the face, and it is usually obvious from birth. Individuals with DS have flat facial profile, thick epicanthal folds in the corners of their eyes; they have smaller mouth and so they have protruding tongues. People with DS also have low muscle tone. They usually have an overall smaller stature than their peers. And as mentioned earlier Down syndrome causes developmental delays, so children with DS would usually sit, crawl, walk, and talk later than their peers.

Apart from the general symptoms of Down syndrome, there are other challenges that a person with DS may suffer from. Most individuals with DS have learning disabilities; some have challenges with their vision, hearing impairement, challenges with speech as a result of the protruding tongue. A number of them have a hole in the heart, which would need surgery.

                                   

 Photo of Cora Slocum, an American child model with Down syndrome, courtesy www.themighty.com

I remember reading in the dailies in 2009 about a small girl with DS, Victoria, who went to India for surgery; Down Syndrome Foundation Nigeria had helped the family raise the money. I was so excited, thinking the little girl’s DS problem had ended. I later learnt that the surgery would only give her a chance at better survival in life as she had had a hole in her heart, but it does not take away the Down syndrome.

In the past, people with Down syndrome were considered useless, as people with no future; thank God for better understanding people with Down syndrome are living quite successful lives. With special education, they are trained to be independent and to be vocational, hence they can fend for themselves and support their families. Some are able to go to regular schools, and up to college level. And some of them have interest in sports and are doing well in Special Olympics. Recently, I stumbled on a website about an Australian model with DS, Madeline Stuart, who featured at the New York Fashion Week this year.

Down syndrome cannot be prevented or treated, but with early intervention, proper education, appropriate training and good health care, the child can live a successful life. For many individuals with Down syndrome, speech therapy will be needful; vocational skills development is also very important, you want an adult that can take care of himself or herself. Some individuals with Down syndrome have been seen to do well academically, because their parents supported them. So whether it is vocational skill or cognitive development that your child needs, as a parent it is your duty to find the help that will build these skills in your child.

In Nigeria, I am aware that there are people and organizations that provide education and support for individuals with Down syndrome and their families; the Down Syndrome Foundation of Nigeria being top on the list. The Zamarr Institute, Abuja and Eleve Great Minds Special School in Ile-Ife, Osun State are also centers I am aware of that provide education for children with Down syndrome and related disorders.

If you know of any other special school, or regular school anywhere in Nigeria that provide education for children with Down syndrome, please drop the information in the comments or send me an email via adelolaedema@gmail.com. Thank you.


Again let me say Happy World Down Syndrome Day!

Does Your Child Repeat Words?

Me: How are you?
Child: How are you? I’m fine, thank you. And you?

Me: Have you finished your work?
Child: Have you finished your work? Yes

Have you experienced this before? Quite a number of children living with autism echo people talking to them. This behavior is called ECHOLALIA

Echolalia, as the name suggests, means “echoing” someone or repeating what has been heard. It is a behavior that is quite common among children on the autism spectrum. The child may repeat a sentence said to him, or echo words that he heard before, maybe from the television. You can see a child reciting, word for word, conversations from a movie. Sometimes, you can hear a child saying things like “good job. (Name) is a good boy/girl” or “don’t do that! That is naughty”, and you know the child is just reciting what he/she has been told before.

Echolalia is not exclusive to autism. Although it can be displayed by children with other disorders, it is usually the way children pick up speech; some neurotypical (NT) children (regular children) learn to speak by echoing. Research says that children will usually echo other people’s words till they are about age 3, that is when they confidently use their own words. So in a way, echolalia is good because it means the child is gaining speech.

Echolalia can be immediate (the child echoes the speaker immediately) or delayed (the child echoes the speaker minutes, hours, days, months, or even years after hearing the words). Sometimes the child will repeat something you don’t want him/her to. I remember working with a boy who would come into group class and start calling the names of the other pupils, saying it’s your turn. He used to use the same tone, pitch, and accent as his teacher used. Amazingly this little boy, who was 5 at the time, did not have his own words; he could only say words other people around him had said. Many of these children are like that. Some will even use echoed words appropriately, maybe as response to a question or to make a request.
Although echolalia cannot easily be treated in children with autism, we know that as the child’s language develops, echolalia is expected to reduce. To help a child with echolalia; model words and sentences exactly how you want the echolalic child to say it. I believe that is the most important way to treat echolalia. It definitely sounds easier than it really is, but it is a sacrifice that is worth making. To build vocabulary, you can label pictures or objects for your child. You can name pictures in story books; let him/her touch the pictures and say the words. Playing and labeling toys and objects are good too. It is important to teach functional words; words that your child needs to express himself in requesting for a need, or to express joy or displeasure. While teaching your child to say “yes” or “I want…” teach your child also to say “no” or “I don’t want”. You don’t want your child saying yes when he/she wants to say no.
Introducing an augmentative form of communication  (AAC; pictures or sign language) can also help to build vocabulary for your child. It is important to work with your child’s speech therapist on the appropriate AAC to use for your child.

Some years ago, while working with an echolalic boy, we taught him words and sentences to communicate his needs. We also introduced sign language to augment his speech. In a short while, his speech improved. Although he still echoes, mostly words from cartoons and Barney and friends, he communicates his needs very well and his speech keeps improving.

I read that Temple Grandin in an interview was asked about how she grew to become as “remarkably verbal” as she is now, considering that when she was younger, she was called a “tape recorder” because she used to echo words and phrases. Temple answered and said “Well, what happens is…as I get more and more phrases on the hard drive, I can recombine them in different ways, and then it’s less tape-recorder like…it’s gradual learning…you gradually just keep getting better and better and better.”

So if your child is echoing everything, be grateful that he/she is talking, be patient with him/her, and keep working to help improve speech. God bless you.

Ps: Have you been following our #ThrowbackThaursday #AutismAwareness on Twitter? Follow @adelolaonautism or @pdelols. You can also send emails to adelolaedema@gmail.com. Thank you.

Helping our Teenagers and Adults with Special Needs Build Healthy Relationships and Live Successfully

For many individuals living with disabilities (physical, visual, learning related or otherwise), day to day functionalities ranging from self-grooming to other activities of daily living, and more importantly socialization and initiating healthy relationships can be challenging. For many parents and teachers of children with special needs, a primary concern is how these children will function as adults. It is therefore important for educators and family members to teach them, early enough, functional skills that will help them live more functional lives as adults.

For four days in February, Patrick Speech and Language Centre will be hosting parents, teachers, guardians, care givers, and all other persons working with people with disabilities for a training themed HEALTHY RELATIONSHIPS AND AUTISM- A GUIDE TO ADULTHOOD. The training will focus on:

 

·        Self-care, human sexuality, relationship development and a proper guide to adulthood

 

·        Provision of guidance and information on the above mentioned to families, communities and persons working with individuals with disabilities.

 

                                                                            

The training will hold between the 15th and 18th of February 2016 at the St Glorias College 28/29, Adekunle Fajuyi Way GRA-Ikeja, Lagos from 10am – 3:00pm daily. It will be facilitated by Dr. Lawrence Sutton, a renowned psychologist from the US. Dr. L Sutton has worked for over a decade with individuals with developmental disabilities, he is also one of the forefront facilitators at the yearly GTB Autism Seminar in Nigeria.

It is important for me to say here that Patrick Speech and Languages Centre (PSLC) has been at forefront of training on autism and other related disorders. It is a centre designed to assist individuals with Autism Spectrum Disorders (ASD) Asperger’s Syndrome, Speech and Language problems and other learning disabilities.

So back to the training! Is it going to cost you money? Yes! But at a subsidized rate of 50,000 Naira. Also there will be discount for 5 or more participants coming together.

How do you register or pay? Simple, send name and phone number of the participant(s) to patrickspeech1@gmail.com. And pay to the account, Patrick Speech and Languages Centre, GTBank 0004805503.

 

For further enquiries in this regard, please call 08180127108, 08038957022, 08030833602.

My Claim to Sameness

One behaviour that is noticeable in individuals with autism is a desire to follow routines. Some may stick to a daily routine, or the routine may be in how they dress up, or how they get work done etc. Recently I met a child on the spectrum, whose hair combing routine was fascinating. For every time she had to comb her hair, she went about it in a way that almost seemed like a ritual.

While I stared at her as she did her thing (I’m sorry, I couldn’t help it), fascinated by her routine, I remembered that I had written an article, “my claim to sameness’’, for an autism online campaign in 2014. I decided to share that article with you:

“There are two possible routes that lead to my house which I like to call the ‘In-route’ and ‘Out-route’. For reasons I cannot remember, I take the ‘Out-route’ when I leave the house and the ‘In-route’ when returning (I guess it’s just a weird habit). Recently, on my way home, a motorcyclist turned to my “Out-route” and immediately, my brain revolted. I insisted that he passed the “In-route” to which he obliged. He didn’t get why I was so insistent; to him, both routes lead to the same house. What he didn’t understand was that it had become a routine for me; this was my “claim to sameness”.

After I alighted from the motorcycle, it occurred to me that the kids I work with also crave the same need for routine. The only difference was that I could communicate my own need but they couldn’t.

It is undeniable that individuals with autism are different; their behaviour, social skills, and communication skills exemplify their peculiarity. However, does this peculiarity make them lesser humans?

 

                                              

 

Individuals with autism have similar needs as people without autism but the challenges of the disorder have served as limitations to having these needs met. Children on the autism spectrum have similar desires for routine like I do. Like every other individual, children with autism seeking love, acceptance, and a right to be themselves. They want people to look beyond their disorder and see them as individuals. They desire people who will be patient with them as they learn to manage the limitations and challenges they are faced with and they want to love and be loved in return.

Will you at least try?"

 

*The online autism campaign was organized by The Autism Support Circle Initiative (TASCI), and supported by www.mymindsnaps.com. They had three articles talking about social acceptance for individuals living with autism. Follow @theautism_sci on twitter for more on autism awareness. And please visit mymindsnaps.com. I am you will be glad you did.

 

It's Our Anniversary!!!

Have you ever wanted to do something and you kept procrastinating till it seemed too late? This week I was at a retreat organized by a youth group called G-Next, Nitro 2015, and I shared with them how Autism Gist was conceived at Nitro 2012. I kept procrastinating on starting the blog for a whole year before I finally put up the first article. At some point in my procrastination, I felt that I may never put it up. I saw another blog online, and felt my blog was not needed anymore. But on December 31, 2013, I decided to put up the first post on the blog.

This year 2015, I have been privileged to meet people that thanked me for having a blog on autism, mostly parents. I got feedback on how reading from me helped a woman respond appropriately to a child she met in a children’s church, who is on the autism spectrum. The lady said they would have just assumed that the child was hearing impaired if she had not read about autism before. All these feedbacks made my 2015 and made me happy that I started the blog.

                                                  

 

This year, I also met some parents who have children with different special needs, who have procrastinated on finding help for their children, and have somehow given up hope that getting professional help for their children may be too late. I am a strong advocate for early intervention, but that you have not started early does not mean you should not start at all. In 2014, I wrote an article on starting early once you discover that your child may have autism or any other form of special needs; as much as I will still put that opinion on the front line, I want to encourage some parents who have not started to “start”. Get the required help for your child, and you will at least have hope as regards that child.

Today December 31 2015, an idea that was conceived in December 2012 and birthed December 2013, is 2 years old. I wish I was more consistent in putting up posts, but I am glad that at least the ones I have put up have been relevant to a few people. This year I started a new project, #ThrowbackThursday #AutismAwareness on Twitter. The response has been really good; for that I am grateful.

I have said in a previous post that on the blog, I am introducing a new project, “In Other News”. In Other News will address other forms of special needs. I hope you will support this project by sharing the posts, just as you share my autism posts.

On this anniversary, I want to thank the people that have supported this blog, sharing our posts time after time. You are the reason people have stumbled on the blog and have become followers. I also want to thank the people that have given feedbacks, you encourage me to go on and to do more. And importantly, I want to thank all the people that have visited the blog one time or the other, seeing the number of visits to my blog always make me happy. God bless you all.

                                                  

Remember to follow @adelolaonautism on twitter, and like my Facebook page, Autism Gist with Adelola. Thank you.

 

I wish you all a Merry Christmas in arrears, and Happy New Year in advance.

A Voice for Persons with Disabilities

Today, December 3, is the International Day of Persons with Disabilities. I cannot believe it is December already. Wow! It is countdown to 2016 already, and if you are like me, you would have started taking for 2015 and planning towards 2016. All the best with that.

On Saturday, November 28, I was privileged to be at the third anniversary of a special needs center, Pison Therapy Center Ikorodu, Lagos State. Pison Center caters for the needs of children with different disabilities; they have children with Autism, Down Syndrome, cerebral palsy, microcephaly and other disabilities.

Recently, I also met the director of Cerebral Palsy Center (CPC), Mrs Nonye Nweke. The center caters solely for children with cerebral palsy. Mrs Nweke blogs on. www.zimuzondu.wordpress.com.  She writes about her daughter, and her experience with cerebral palsy.

                                               

In October, there was a lot of awareness for different disorders: autism, dyslexia, ADHD (Attention Deficit Hyperactivity Disorder), Down Syndrome, and Cerebral Palsy. Did you hear about the new sesame street character that has autism? Her name is Julia, and she was introduced in October.

I am really glad that autism is gaining this much awareness around the world, especially in Nigeria. I personally believe that we have grown because of the level of awareness that autism has now. I know that more children are better diagnosed now because doctors are aware that autism is real among us; we have more people willing to work with children with autism because they know that these children can be more independent with therapy. So many benefits have come with increase in autism awareness.

On this international Day of Persons with Disabilities, I sincerely hope that voices will be raised for these different disabilities. I hope that there will be more awareness for the different disorders, and more people will get involved in providing a better life for the individuals that live with these disorders.

As Autism Gist with Adelola, I shall be playing my part. In 2016, I shall introduce "In Other News", a series of articles that talk about other disorders apart from autism. In other News will feature information on other disorders, people with the disorders, their families, and the people that work with them. We will also talk about different ways we can help them.

Let us take this gist a little further…