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.
Thursday, April 30, 2015
Saturday, April 25, 2015
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*
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
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.
"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.
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
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!
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