Diary of a Beautiful Special Needs Sibling

  RETT SYNDROME   We learn every day. I just learnt about Rett syndrome this year and I thought to share it with you. This is a neurodevelopmental disorder that affects mostly girls.   This disorder includes early growth and development followed by a slow development. Other characteristics include; loss of use of the hands, slowed brain and head growth, problems with walking, seizures, and intellectual disability. The severity of symptoms varies from child to child, just like Autism.  Before the symptoms begin, the child generally appears to grow and develop normally, but with little challenges as loss of muscle tone, difficulty feeding, and jerkiness in limb movements. Other symptoms may include walking on the toes, sleep problems, , teeth grinding and difficulty chewing, slowed growth, seizures, cognitive disabilities, and breathing difficulties while awake such as hyperventilation, apnea (breath holding), and air swallowing. Gradually, mental and physical ...

 Last year, I prayed that I would be part of the speakers for the GT-Bank Annual Autism Programme and I got an opportunity! As a chronic overthinker and scaredy cat, I began to worry if I would be able to do it. Everyone knows Public speaking is not my best forte. I couldn’t raise my voice in a group of ten, why would I be able to do it with over 300 people in the room and more virtually? Despite the voices in my head and my tailor trying to mess up my life the day before, I promised myself that I would let nothing bother me.  Nothing. This year’s theme is creating a community of Awe-tism Advocates and I couldn’t love it much more. This was the exact one I wanted to go into. To be honest, I cannot seem to understand how GT bank had been able to plan something so perfect. Everything was perfect for me from the dance and drama presentation by Corporate dance world, to the end of the two-day conference.  I was part of the panel discussion "It takes with a village", this mea...

  My brother refuses to sleep. Help me! A good night rest is so NEEDED, but unfortunately it’s not guaranteed for everyone, especially for people with autism.  Younger, my little brother used to have trouble staying asleep. He would wake up by 1am and won’t be able to sleep afterwards.  Individuals on the spectrum often have trouble falling and staying asleep. He would wake up in the night frequently and of course, decides that “If I can’t sleep, no one else can”. Many people with autism have other conditions ,  such as  apnea, gastrointestinal problems ,  attention deficit hyperactivity disorder  (ADHD) or  anxiety . What I have learnt is that sensory sensitivitie s   to light, sound or touch may contribute to difficulty sleeping. In some cases, people on the spectrum carry mutations that make them prone to sleeping problems.  How we eventually fixed Tobi’s insomnia, if I am allowed to use that word is that we set a routine...

Are medications really effective?? I recall a particular medication my little brother was given by a specialist.   He had a serious reaction to it- his neck became very stiff and he couldn't really move. Of course, my Yoruba parents began to fear and fuss.  I didn't think those kind of medications had side effects.  ASD Medications can be used for various things- to manage high energy levels, to help a child focus, to treat depression, or to manage seizures.   Currently, there is no medication that can cure Autism spectrum disorder but there are some that can help treat certain symptoms associated with ASD, especially certain behaviors. Research has shown that medication is very effective when used in combination with behavioral therapies.  However, not all m edications work for all children. If you need to get a particular medication for your child or ward, the first step is to collaborate with a good specialis t.   It is important to work...