Thursday, September 17, 2015
It's #ThrowbackThursday
I cannot believe I went MIA (missing in action) since April, Autism Awareness Month. I am very sorry. Although I have been silent on the blog, the Facebook page and Twitter account (@adelolaonautism) have been a bit active. About three weeks ago, I started #ThrowbackThursday #AutismAwareness posts on Facebook and Twitter; the response has been good. You can be part of it every Thursday. This week, I have decided to bring the throwback to the blog.
June was quite active in the Nigerian disability community, autism being involved as well. Between the 22nd and the 25th of June, the International Conference on Disability (ICD 2015) held at the Civic Center, Victoria Island, Lagos. The GTB Autism Awareness Seminar held at the MUSON Center on the 30th of June and the 1st of July. The ICD had in attendance stakeholders in the disability community; people with different disabilities, parents, educators, health professionals, lawyers, employers, policy makers, including representatives of the State and Federal Government. Governor Umaru Tanko Almakura of Nasarawa State (who gave the keynote address) and former governor of Ekiti State were also in attendance.
The focus of this year's edition of the conference was on inclusion for people with disabilities (PWD) in the society. People with different form of disabilities talked about the challenges they had experienced, because certain things were not put in place to include them in the society. They also talked about how they have learnt to overcome these different challenges, how they have to work hard to prove themselves as competent. For me, there were certain things that struck me at the conference, and I'll like to share two of them.
Talking about laws that protect PWDs in Nigeria, it was emphasized that rather than asking for new laws, we should seek for the enforcement of existing laws. Do you know that there is a Special People's Law in Lagos State? Well there is, and we are not taking advantage of it because we do not know about it. Also we were told that PWDs can go to the office of the public defender to seek for legal help when needed. A plea was also given to lawyers present to volunteer some time in the week to the office of the public defender.
Another thing I must talk about is employment of PWDs. Farida Bedwei (an entrepreneur with cerebral palsy) said that PWDs should not be considered as incompetent, using her story as an example. She told the PWDs present not to expect jobs to fall on their laps, but should prove themselves as competent when seeking for employment. At the end of the session on employment, some employers present, including Tonye Cole (MD of Sahara group), promised to look into how their companies employ PWDs.
I mentioned the GTB Autism Awareness Seminar that also held in June. This last edition was the 5th; the first edition was in 2011. We had facilitators from the US and Nigeria speak to us on different issues; policies, caring for children with autism, positive behaviour, occupational therapy, speech and language therapy, bio-medicals etc. Since it was primarily an autism awareness program, there were also lectures on introduction to autism. There was so much to learn. The questions and answers sessions were very helpful, as participants were able to find answers to their concerns that had not been addressed by the facilitators.
These two events were opportunities to learn new things, confirm things I had known before, and meet people. It is always a beautiful thing to meet people that are ahead of you in the field, and people that look up to you. In fact, I was encouraged with my blog, as I met two important people that said they follow Autism Gist with Adelola (I could not take pictures, as I was not with my phone).
Please plan to attend these events next year. As soon as I hear anything about them (and any other event), I will definitely announce them on the Facebook page and on Twitter.
Keep following us for gist. Like the Facebook page and follow us on Twitter for more #ThrowbackThursday.
Thursday, April 30, 2015
Touching lives
Her name is Ranti Oguntayo. She is someone I respect so much. She used to be my "oga" in The Zamarr Institute, Abuja. She was the senior support worker at a time. Her love and her passion were so inspiring to me. She always seemed to find a way to get the job done. I had always been curious about how she started working with children with autism, and fortunately, my curiosity was fed this month.
"It all started in my Church sometime ago. They had some children with hearing impairment in their children's church, and they had to help them. Then they invited me and some other members to learn the American Sign Language. I did pretty well in that class, and so I started working with children with hearing impairment in the Church. About a year later, I was invited to Zamarr to work with a new child that they had, who was hearing impaired. The Zamarr Institute is actually a center for children with autism and related disorders. Zamarr then sent me to Patrick Speech and Language Center, Lagos for training on autism, so that I could effectively work with that child and other children on the spectrum. During the training, I fell in love with the children I met, and the job. I remember Mrs Akande giving us the trainees an assignment to assess some children. By the time I submitted my assessment, she was impressed, and she encouraged me to do more. That was how my autism journey started. I returned to Abuja, and started working with the children at Zamarr. I have had the privilege over the years to go for more trainings in Nigeria and South Africa."
Ranti was the first person to give me a platform for autism awareness. That was when we were both at Zamarr. She is an amazing trainer; she taught me a lot. She consults for special needs centers and mainstream schools, training members of staff, integrating children with autism in inclusive settings. She provides different services for clients; behaviour modification, learning support, including counselling and support for parents.
I asked her about the challenges of the job, and she said, "Working with children with special needs is challenging on its own. The children are so different, and you cannot assume that what worked for one child will definitely work for another. Another major challenge is finding a good mainstream school for a child, within the parents' budget, considering that not all parents can afford the expensive schools. Some schools would not even accept the child. Some schools that accept such children are not supportive, and that can affect the work of the person providing learning support". However, she says the job is interesting and rewarding. Really, what can be more rewarding than a child you are working with, making progress?"
My hangout time with Miss Ranti ended with us comparing notes on the job, and I could not help but feel grateful that I have been privileged to meet someone like her in this field. She shows me that passion for the job, and love for children with autism does not have to come from parenting a child with autism. These children are lovable. They need our support, patience and care. With these and a little more, we can live in a society that is special needs friendly, and these children can fulfil destiny, regardless of the limitations of their condition.
Autism Month may have ended, but autism awareness continues. This blog remains active. Also, please keep spreading the word about autism. Thank you.
Saturday, April 25, 2015
Celebrating a parent meeting others' needs
Recently, I had the privilege of interviewing Mrs Akande for the blog, as part of our Autism Awareness Month. When I asked her about how her journey into autism started, she smiled. She told me that her journey started with her son, Agbolade. Agbolade was diagnosed with autism at age 4, but before that, his mum sought for help for him while seeking for the doctor’s diagnosis. She got him different professionals to work with him. And she said she stayed with them for a long time, even though it took a while for him to show the expected progress. She said that he was learning, but did not show progress for a while. And then he eventually picked up. More than 10 years later, Agbolade is about to go to College. And he is exceptionally good in Mathematics and Sciences.
With her experience in helping her own child, when the Holy Spirit told her to start a center for children with autism, she set out to help other parents like herself who need help for their children with autism. This vision has birthed Patrick Speech and Language Center and Pure Souls Learning Foundation. Patrick Speech, which started in 2006, provides different services for individuals with autism and other related disorders, ranging from age 3 to age 35 years. Their services include behaviour modification, speech therapy, occupational therapy, music therapy, social integration, vocational skill training for adults and teenagers, and much more. They even prepare their teenagers and adults to work in offices. The students have both the group class and one-on-one experiences. The aim of all their services is to help these individuals attain maximum independence. Patricks has employed some of their former students, and they are paid salary.
On the other hand Pure Souls, which started a year later, is an NGO that finances the education of some children with special needs, whose parents cannot afford education for their children. Pure Souls is also involved in creating awareness about autism and training professionals that work with these children, and they provide support for parents of children with autism. Pure Souls has taken autism awareness beyond the borders of Lagos to different States of the Federation, and they have trained professionals in different States as well.
Mrs. Akande said that being a parent of a child on the spectrum has really influenced her work, because it gives her hope for each child that is brought to the center. She does not believe that any child’s case is hopeless. Her experience drives the work in Patricks, as she will not take less than excellent service from the therapists. Patricks spends quality amount of their budget in getting their therapists trained, so that they can keep giving better and more quality service to these individuals that are in their care. She also said that her experience encourages other parents and gives them hope. And sincerely, hope is very important for both the parents and the people that work with these individuals.
Mrs Akande has a message for parents of children with autism. She says that they should be patient with their children and not change therapists anyhow. She said her son did not seem like he was making progress for years, as he did not talk, but she did not change therapists. And eventually, it paid off, as he has done very well over the years. She also says that they should be involved in their children's lives, love and support their children with autism, without neglecting the other children they have.
For siblings and family members, she says they should be patient. Siblings should understand that their parents may give their sibling with autism more attention because special needs children require a lot of attention, but that does not mean they are loved less by the parents. They also need to love and support that special needs sibling.
Talking about Religious houses, she said they should please integrate children with autism and other special needs in their places of worship. Everybody has a part to play.
She does not leave out the professionals that work with these children. She says to them, please give quality service. Even though money is important, you cannot be in this business for the money. Go for trainings and improve at what you do, as these individuals need quality education.
Before I left her office, Mrs Akande prayed for me. By the time I left her office, I had been so inspired. The Autism community is so blessed to have this woman. I hope one day, the same will be said of me.
Thank you for reading *Hugs*
Monday, April 20, 2015
Lessons from a Mum
"I am a parent with a set of twins diagnosed to be on the Autism Spectrum. Yes, as soon as I heard, it broke my heart, despite the fact that I already knew the diagnosis was coming.
DIAGNOSIS:
Twin two's autism was very obvious; no speech at all, no eye contact, not responding to his name, laughing to himself, every classic autistic symptom. So I knew what to expect, but it still hurt to hear the diagnosis.
However Twin one did not show any of these signs, so when he got the diagnosis, it was like a double edged sword to my heart.
Twin one’s autism was harder to diagnose as the specialists weren't certain. He was friendly with them when they paid us a visit at home but His speech wasn’t great and I hoped and prayed he was just having delayed speech. In fact, at the initial stages, the specialists assured me with confidence that he was not autistic, as autistic kids are not friendly.
However, more detailed examinations were carried out, the specialists went to the twins nursery to watch them play and relate with other kids. They found that twin one had issues relating to his peers.
SUPPORT:
We do get some financial support due to their situations, as required by the UK law. The extra money though, does it make your life any better?
Yes, a little bit.
In life, the lack of money makes everything harder, but as soon as you get a little bit extra financial help, it’s not as bad.
For example, taking care of twins is exhausting enough , but when they are autistic, it is superexhausting, and you are only fuelled by the love for your kids . UK is not like Nigeria where you can get help easily, whether paid or family and friends. No , its very difficult to get help. So, with this little financial assistance you get from the government, as a mother you can decide to treat yourself and /or your family to something nice, maybe a nice holiday, a break from your normal challenges in life. Just something to make you feel like your old self and forget about your worries , even if it is only for a short while.
The twins also get special education. Normally, UK school ages starts at 4. If your kids are less than 4 years old, you have to pay for their nursery ( or partly pay) but due to our situation, the twins started to receive free full time early education when they were 3, to at least help them catch up with their peers.
It kind of worked as one twin has improved so much they would be going to a mainstream school, while the other goes to an Autism specific school.
DEALING WITH IT
I think the best way to deal with autism, like many other challenges, is to just get along with it. I am so used to it, I forget my kids are autistic. I feel weird when I tell my friends that my kids have autism and they give me a pitying comment or look. I don’t pity myself. My kids are different, yes! But so are many other kids.
I have to point out to people that they are autistic so that they can understand why the boy does not reply their questions, but to me, I feel like that’s life. If I didn't have an autistic challenge, it would be something else, really.
It also helps that my closest friends have autistic kids too. This is the best support you can find, as no one is more understanding than another parent who knows exactly what you are going through. So we get together for drinks often with our kids all playing together.
So, surround yourself with tolerant friends and family, educate them, be patient with them while they catch up. Just like you've had time to process the needs of your child, they would need time too.
WHAT TO AVOID
With time as your autistic child grows, they fall into their own routine, you learn what they like and what they hate, pretty much like every other child, except that a child living with autism is more rigid, they are not flexible and don't understand change. So you have to adapt yourself as parent to these needs
You also have to avoid paying so much attention to the internet and what others say about their experiences or what they think they know about autism.
Autism is very individual. There is a saying within the autistic community, “if you have met one child with autism, you have only met one child with autism”. This means that no way on earth would you find another child like that child.
Picture courtesy Autism Speaks
Every child’s symptoms are different , and I should know with my autistic twins. So never let anyone tell you what to do or how to do it. Take advice? Yes! Do take advice, but you should apply these advice with caution and adaptation; like break it all apart , use what works for you discard what doesn’t or wouldn't work for you. For example, I had family members and the internet telling me I was a lazy mum because my kids weren’t potty trained at 3 years old. I ignored all of them because I knew, I had to wait till they were ready to be potty trained. It was one of the best decisions I ever made. It took half a day to potty train twin one, he was ready and it was such a stress free experience.
Twin two took longer, I waited till he was almost 4, he got it immediately too. However he has physical challenges pulling down his pants, so there are small issues to work on. But the most important thing is , he isn’t stressed out because of the potty training, he is taking it in his stride and so am I.
So to all parents of children living with autism out there, just love your kids the way you should, or even more than you should. This is your life, it is not the way you wanted it, but it is still your life no less; and what you make of it, is what it is going to be. So enjoy the ride."
Thank you for reading. We still have others to learn from on this blog, so come back for more gist.
Wednesday, April 1, 2015
My Autism Story
Friday, February 13, 2015
HOW SHALL I COMMUNICATE WITH YOU?
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



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