Please, don't say the "A" word.....Autistic

My son was almost two before I started seriously seeking answers. I guess fear of the "impending" kept me from taking the necessary actions earlier. He didn't have any words to communicate his needs yet, so we bathed, fed and put him to sleep on a schedule. He knew his ABC's and 1,2,3's till 100 and had started to spell 2-3 letter words using plastic alphabet letters we got him for Christmas. It was new-year’s eve and we had just arrived at our church for the "watch night/cross over service" which would take us into the New Year. My mood was melancholic; I had a lot on my mind, concerning my son and my marriage.  Getting out of the car, my husband carried my son and we started walking to the church entrance, which was just a few blocks away. My son looks up at the sky and sees the moon, it’s the end on the month, so the moon is huge and clear with an almost yellowish tinge. He stares at it for a bit, then points up and says, "moon".  You can't imagine my joy, I was filled with so much excitement and hope. He had pointed without any prompt and identified an object of interest, he then attempted to share this finding by looking back at me. Specialist call this “shared attention” something the mum of a typically developing child would not even acknowledge as shared attention is something a typically developing child does naturally. At that moment I came to  the realization that my little guy was in there, trying to communicate, trying to figure the world out and trying to find his words. Immediately I followed his keen observation with reinforcements - "Yes, its the moon, the moon is up in the sky!" He rewards me with a conservative smile. That was the day I made up my mind to get professional help for my son,  I had to get a specialist opinion and start interventions "if" needed, ( Yes, I was still hopeful the specialist would say it was just language delay). 

My first stop was Google, I search the internet night after sleepless night reading about developmental delays, signs of Autism, how to differentiate an intellectual disability from language delay and at the same time I started learning about and instituting home based interventions mostly speech therapy. I stumbled on Gemiini Education systems on YouTube. It’s an online speech therapy app that helps children with autism, Down syndrome and other intellectual disabilities to learn language, modify behavior and hopefully one day, start having conversations. I tried to carry my partner along but he was very skeptically, so I worked at it on my own ensuring my son watched the videos the recommended times a day/week. we started with imitation videos and worked ourselves up the videos as advised.  Two months into Gemiini my son said “I want Biscuit, please.” It was a huge victory for us! Once a child can say what he want’s, especially wants to eat, and use “Yes and No" in the right context, a lot will get easier. We continued using Gemiini, but also tried many other techniques for language improvement, many of which I will share in follow up blogs. It is important to always have an intervention ongoing, every time for your child and not keep waiting for just the professional interventions as that could take some time to set up and commence. It took a couple of months until I could get Brian an authentic professional assessment. Nigeria is flooded with quacks! I will say it again QUACKS! - Fake therapist parading themselves as developmental specialists!

I visited one educational Psychologist in Lekki on recommendation from a parent. The center was located at Lekki Phase 1, a highbrow area of Lagos state.  All I can say is "Thank God I am a Medical Doctor and that I have learned to trust my maternal instincts without fail." I am not easily bamboozled! She charged exorbitantly for the 1-hour consultation, which I paid without complaint, the place was stylishly set up and I was hopeful of getting some professional answers. She filled out a brief interviewer administered questionnaire which I answered, then she performed some brief observation of my son, asking him questions, watching him play, she then said. 

"Hmm.. I don’t think it’s Autism, it just seems that there is a neurological problem."

She then went on to try and explain how she used electrical pulses to reset a child’s brain, with some weird technology I had never heard about. She explained we also needed to do a more in-depth assessment that would take like 3 days before starting therapy. "Days? Really?" I won’t even bore you with how much the 3-day assessment was going to cost.

Needless to say, I was shocked and highly disappointed.   

I told her that I would have to discuss it with my partner and would contact her at a later date. Of course I never went back.

In the first few months that I tried to find help it became quite clear how difficult it was to get specialist help for people with Developmental Disabilities (DD) in Lagos, Nigeria.

Fortunately for me, I remembered the Children’s Developmental center, which I had visited as a medical student, over 15 years ago.  I had even helped them raise funds when I started my charity in 2007. I quickly checked online and discovered they were still running services, so I paid them a visit and was able to meet up with their founder /CEO to get an expedited assessment for my son.

First hurdle over, the second reared it’s ugly head. I shared my suspicions about our son being Autistic with my partner and the plans I had made to get an assessment - all hell broke lose! Not only was my partner in total denial, he was unwilling to support any effort physically or financially. I was a little deflated, but I didn’t let it bother me much. I had to focus on my son, I knew my partner and me were not at the same place regarding our son state and I could at least be patient until he caught up.

The assessment at CDC took about 5 hours. We saw a developmental pediatrician, child psychologist, speech therapist, physiotherapist and occupational therapist. At the end of her portion of my son’s assessment, the developmental pediatrician sat me down, (I was screaming in my head over and over again – Please don’t say the "A" word, Please don’t say the "A" word!) she said it any way…

And that was how we got a diagnosis - My son was on the Autism spectrum, graded moderate level of the three levels – mild, moderate, severe . When I heard her say it I was shocked, it’s funny that I was shocked, funny that even as a doctor and mother who could see all the signs, some huge part of me really wanted her to say that there was nothing to worry about and it was just a language delay which happened in children who were too intellectually tuned. 

I was shocked first, then sadness came, followed by fear. How was I going to deal with this? Was my son ever going to be okay? Had I wasted too much time already? The feelings and flood of questions in my mind were too many to comprehend at the time. Thankfully the CDC team are true professionals, the developmental pediatrician saw my expression and quickly followed her observation with how early intervention helped tremendously in supporting children on the Autism spectrum gain the social, communication and behavioral skills needed to function in this world. We went on to develop a plan for my son’s interventions and leaving the center I felt a little bit more settled. When I got home, I shared the news with my partner. He didn’t say much. He wanted to know the next steps, which I shared with him. He then went on to be very quiet for the rest of the day, playing with and studying our son like he was a new found experimental creature. 😆😆 

At the time we got the diagnosis, our son was 3 years and 2 months ( it took over a year from when I decided to get professional help to actually find one and secure the appointment). I was pregnant with my 2^ndchild and planning to have my birth in the USA, same as I had done for my son. I immediately search the area in Chicago, we would be staying for early intervention centers and found one willing to have Brian for the 2 months we would be in the USA with plans to start interventions at CDC when we got back from travel. We had so much ahead of us..

There are many take homes for me from this period of seeking a diagnosis to getting one.

I learned that as parents we must make solid decisions about our children and not waste time second-guessing our maternal or paternal instincts, which are AWESOME!

I learned to get professional certified care for a condition as serious as an intellectual disability.

I learned to be patient with my partner and not expect too much .  Everyone is at a different place at every point of his or her lives.

I learned to be strong and to be my bravest every day moving forward as the journey and unique experience with my son and Autism was just getting started.

Please watch out for follow up blogs, there is so much I want to say and share and I will in due time. Leave me comments and questions - good, bad and weird in the comment's section. We are all entitled to our opinions and i have developed thicker skin since getting our diagnosis.

If you have a child with Language delay, even without a professional diagnosis try our Gemiini Education Systems. They have an online assessment you can do, with a one-week free trial. Payment for the service is also scaled to all families with varied socio-economic status have assess. https://gemiini.org/#/get-started

Also to share your concerns about your child's development, visit us at The Community Health Outpatient Clinic, Lagos University Teaching Hospital (LUTH) - Idi-Araba. Accident and Emergency building, 2nd floor, Tuesdays and Wednesday, 9am-1pm. 

To get a full developmental assessment for your child, contact the Children's Developmental Center  (CDC) at 31 Modupe Johnson Crescent, off Adeniran Ogunsanya Street, Surulere, Lagos. +2348023176525, +2349095524021, info@cdcafrica.org.ng, https://cdcafrica.org.ng/