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…

Independence and the month of October

October has been  an interesting month for those of us in the special needs community. Throughout this month, there have been Down syndrome awareness, Dyslexia awareness, ADHD awareness,  and Cerebral Palsy awareness going on. On October 7, people around the world wore green outfits to mark the Cerebral Palsy Awareness Day. I did not join the rally here in Lagos, but I wore a green blouse to work. Although I have a similar post, to celebrate this month I had considered writing about these different disorders; but as October is also Nigeria's independence anniversary, I decided to write something else in the spirit of independence.

I used to work with a boy living with autism, who used to have major sensory overload. To calm him down, we would wrap a blanket around him to provide deep pressure. After a while, we taught him to ask for a break, go to the sensory room, which was close to his class, and give himself the blanket roll. What a relieve that gave him, and us. Working with children with different kinds of special needs, in different centers, I have learnt that the big picture of our job is for the individuals to attain maximum independence. As we prepare the Individualized Education Plan (IEP) for each child; setting goals for each term, month, week, and day, the main aim is to help the individual attain maximum independence, depending on the severity of the condition. Sincerely, different children will attain different levels of independence, but the desire is for each child to attain the maximum level of independence he/she can attain.
As a parent, sometimes the easiest thing to do is to help your child do what he/she should do without assistance. I know that it is faster, easier, and it has less hassle to just help the child. Yes, your son spills his food when he eats, and you have to sweep after he is done, so you would rather just feed him. Okay, your daughter wastes your time if she gives herself her bath, and that makes you late. I work with this children, and I can tell you that there are times I am so tempted to prompt (assist with) an activity a child is supposed to do independently, because it is the easy way out. But think about this; that your child will not always be a child. Do you know you will not be there forever? What will happen then? I am not overlooking the fact that the child's case may be severe, but can he/she be as independent as possible?

I hope that parents of children with different needs can learn from this article, but I may be speaking from the autism perspective mostly (it's not my fault, the blog is Autism Gist). There are certain skills neuro-typical children pick up as they grow up, without someone actually teaching them, but children with autism have to be taught specifically. A major example of such skills is a group of skills referred to as Activities for Daily Living (ADL); bathing, brushing, using the toilet, dressing up, etc. Imagine a 35-year-old man, who cannot clean up after using the toilet, or a young lady who cannot give herself a bath. I am sure that is not a pretty thing to imagine. Teaching ADL is not exclusive to children living with autism, it is also needed by people with other disorders. As much as you are particular about building your child's cognitive skill, social skill, behavior, communication and what have you, know that your child's basic skills will not come automatically as these other skills are built; you have to TEACH the skills.

Dealing with a non-verbal child can serve as a limitation to encouraging independence. First, it is important to help the child find appropriate ways to communicate (I have an article here about communication for children that are non-verbal or limited in speech); but in helping a non-verbal child to be independent, you may need to consider the use of pictures. In fact, pictures can be useful even if the child is verbal. It will serve as a visual aid, giving pictures to the words spoken. Another important way of encouraging independence is routine. You can create a schedule plan for your child, which breaks down activities he/she has to do for each day; and stick to it.

Removing the reins can be a bit difficult, but you can create a plan on how to go about it. You can speak with your child's therapist, who can help you with planning. Take it one step at a time, but don’t be slow about it. Remember to put in perspective the severity or mildness of your child's condition, and the level of support your child requires at every given time. You will be frustrated, and your child will be frustrated if the tasks seem unachievable.

So as we celebrate Nigeria's independence, I look forward to celebrating with you, your child's level of independence in a near future. We will celebrate together each milestone, because your child can do much more than you can imagine.

All the best, and I hope it's not too late, or "too early" to say Happy Independence to you.

I mentioned before that my Autism journey started at Patricks (as it is called for short).
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 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 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.
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.
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*

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.

Touching lives

We started 2015 Autism month with the story of my own Autism journey. We have read from a mother of children with autism. We have also read about a mother of a child on the spectrum that opened her heart and doors to other children and their parents. We are ending this month, reading about a woman, who like me does not have a child on the autism spectrum, but found herself fulfilling a life assignment meeting the needs of these children and other children with special needs.
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.

Celebrating a parent meeting others' needs

I mentioned before that my Autism journey started at Patrick Speech and Language Center. Mrs. Dotun Akande is the proprietress of Patricks (as it is called for short).

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*

Lessons from a Mum

This is from a lady I respect and admire a lot. She seems to me like someone that can take any skill and develop it excellently in a short while. Also she has twin boys that seem like the cutest set of twins in the whole world. They remind me of how cute children with autism can be. Today, we can learn from her somethings that she has learnt in her years as a mother of children on the autism spectrum.

"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.

My Autism Story

I remember my first time in a special needs center for children living with autism. That was July 2009, and I was sitting at the reception area of Patrick Speech and Language Center, Lagos. As a final year Biology Education student, I really needed to know what my future was going to be like. The opportunity to “find myself” came when Nigerian University lecturers embarked on a nationwide strike. I decided to volunteer in an autism center; at least that would have made the break useful.

I sat down at that reception area and saw parents picking up their children and I couldn’t help but notice how fine the kids were. I was excited and anxious at the same time. Mrs Akande, the Proprietress of the school, had told me to resume in two weeks. I didn’t know what to expect. I was also afraid, as I had read and heard different things about people with autism. But somehow, I was happy inside me because somehow for the next few months, I was going to be learning something new.

After a few weeks of working with these children, I got home and told my sister “I think I’ve found my future”. I told my sister about the fine children and how beautiful their smile was (anyone that has met a child with autism can testify that they have the most beautiful smiles in the world). I had worked a few weeks in one-on-one and in group class and I knew that I had a part to play in the lives of these children. I knew that these children needed more than people looking for temporary jobs to work with them. They needed people that would commit to them, and that believed in them, regardless of the limitations of the disorder. When I was done with my gist, she said to me “you need to work with these children”. That was how my journey started.

That journey has taken me to different States and organizations in Nigeria; teaching these children, training others to work with them and creating awareness on autism. I have worked with children of different ages, and I have not changed my mind about how beautiful their smiles are. Success has been redefined for me. You need to see me rejoicing when one of my kids says the first word in my class, or blows the candle, shows me eye contact, agrees to hold the pencil or the crayon, or starts a task and finishes it, or even just agrees to start the task at all, etc. My joy knows no bounds. I have seen kids that had no obvious skills pick up skills and become independent. And I cannot be more grateful for that day in July 2009 that I sat in Patrick Speech and Language Center, and made the decision to start my journey in Autism by being a volunteer.

Today, April 2, is World Autism Awareness Day, and April is dedicated to autism awareness. I wish everyone Happy World Autism Awareness Day! Don’t just celebrate the day, spread the word about autism. Learn more on autism by reading our previous articles. Also, share as many posts on autism as you can. Thank you.

From the bottom of my heart, Cheers!

HOW SHALL I COMMUNICATE WITH YOU?

Two years ago, a 10 year old boy living with autism came to our school in Ile-Ife. He could echo what people said, but could not communicate his needs. He was violent; he used to bite his wrist and he would attack the adults in the school. In fact, because of my stature, I seemed like his favourite target. After a few weeks of observation, we concluded that he showed this behaviour whenever he was hungry. As they say “Behaviour is communication”, so this boy was obviously telling us “give me food”. What we had to do was teach him an appropriate way to communicate his need for food. We taught him to sign “eat” with the Makaton sign language while saying “eat”. Not long afterwards, he would conveniently sign and say “eat” whenever he was hungry. We moved forward by teaching him to say “I want to eat”. Now he can tell us what he wants to eat (eba, amala, rice, groundnut, cheese balls etc.). His language has greatly improved in two years.

Usually, when I speak with parents of a child with autism and no or little speech, they would tell me that their most important need is speech. But I have learnt from experience that our major need for the child is the ability to communicate his/her needs.

                                                        photo credit: www.communityrun.org

This brings me to an important topic; Augmentative and Alternative Communication (AAC). Augmentative and Alternative Communication is an umbrella term that refers to communication aids or systems that are implemented to replace or support spoken or written language. It allows people with communication difficulties to express their thoughts, emotions, ideas, and needs. AAC systems range from using simple tools such as one’s body to communicate to using electronic devices; usually based on the severity of the communication limitations. These systems can be aided or unaided. Unaided systems refer to communication with the use of body parts, which may include sign language and gestures. Aided involves using the help of equipment outside the human body; such as pictures, communication boards, communication notebooks, I-pads, speech producing devices etc.

                                     A picture board showing different types of food, copied from Wikipedia

Imagine yourself in a strange land looking for directions and nobody around you understands the English language. I can imagine how frustrating that would be. Won’t it be a relief if you have a picture to express your thoughts? Or somebody around you understands the gestures you are using to communicate? Communication difficulties can cause frustration and anxiety. AAC gives us an opportunity to relieve such frustration and anxiety. AAC has been reported to provide individuals with good quality of life. In children with autism, AAC systems have been shown to improve speech and social interaction, and help reduce unwanted behaviours.

                                           photo credit: www.learningworksforkids.com

But then, many parents express fear that by introducing an alternative form of communication, their children may never see a reason to speak. On the contrary, there are many reports of people whose speech improved significantly after they were introduced to other means of communication. In the school I worked in Ife, we have a girl who two years ago had no speech and could not communicate her needs at age 8. We introduced her to Makaton sign language and picture exchange communications system, and now she communicates her needs quite well. In fact, now she has started echoing when the teacher talks to her.

                                               Makaton symbols copied from www.widgit.com

Augmentative and Alternative Communication systems will meet the communication needs of a child living with autism, regardless of the severity of the condition. One just has to find the right system that will work for that child. But it is important to say that AAC does NOT WORK LIKE MAGIC. It is important to be patient as the child learns to use the communication aid. We do not learn sign language once and become “pro”, it takes time. It may also take time for the child to get accustomed to the chose AAC system, please be patient. You will eventually enjoy the rewards.

With all my love this season... Muah