Friday, October 30, 2015

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.

Wednesday, October 21, 2015

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*