Thursday, March 21, 2013

Kemka's hero, His Mother

With the permission of my friend I will re post this for everyone. I feel this will give people hope, help in situations, encourage families and who knows even help in donations... so I have decided not to post about the next Nigeria tribe.. doesn't mean I have forgotten it, getting back to it after this post...

My Son Kemka

The first and only note I have ever written on facebook was about my son Kemka on the 20th of May 2011 when he turned 1, and here I am again writing about Kemka, my beautiful, unique, awesome son.
Kemka was 15 months when I realized he wasn't answering to his name. This discovery started my journey down a long, painful yet worthwhile journey. I watched him for a while, then voiced my concerns to family and close friends. Everyone thought: "Nyema, you are over thinking it". He has met all his milestones, he babbles and even has quite a few words, he counts 1-3 when walking down the stairs, he is a happy kid! maybe he just doesn't like the name kemka, became the joke of the day.

But as a mother I worried, I was afraid. Slowly I started to notice he didn't play with his peers, wouldn't say bye when I left him to work, wouldn't make eye contact even if you had your face up in his, would rather play on his own and he slowly started to loose the few words he had, and slowly stopped following simple commands. I saw my son disappear from my home and I just had a stranger walking around in his body. By the time Kemka was 19 months I needed nobody to tell me something was wrong. I decided to see the GP with him during my maternity leave in the UK. I did and after seeing Kemka she referred us to a psychologist when Kemka was 22 months and after about 2 hours he came up with a report which was inconclusive as Kemka's hearing test came back fine and didn't quiet fit the requirement for a developmental defect. The doctor recommended that we have a repeat eval when Kemka turned 3. By this time kemka had completely stopped eating, stopped all forms of communication with us expert pulling your hand and taking it to what he wanted, and had stopped following any directives or commands at all, wouldn't respond to his name even if you yelled. This was frustrating and scary. I cried so much I wished I was dead. The more people told me nothing was wrong with him the more I was going insane because I felt everyone thought I was mad. I waited another month then opted to see a pediatrician for a milestone eval. When I told the pedriatrican what I knew to be the history, he conducted anN evaluation for Autism and other related illness on Kemka as well. 1day postpartum............that was a lot to take in.........

We saw the speech therapist and her eval showed Kemkas communication level at the stage of 6 months and by this time he was 24 months. Again a suspicion of Autism but cannot be diagnosed until he is three years old. By this time google had told me all I needed to know about Autism and more, and I woke up in hell every morning  after then. I became afraid of the future what it will hold for my beautiful boy, I prayed many prayers, I cried many tears, I felt completely helpless, wanted to spin my magic wand and make my son OK, make it all go away lil miss fix it just wanted to fix it. My greatest fear came when we will walk into a public place and Kemka will walk away and just keep walking away not looking back to find mummy or anyone else, not even if you screamed his name, I feared that my son didn't know me any more, would just keep walking if I didn't physically stop him and he would walk away and disappear forever, that thought visited my dreams every night. We came back home and I started a search for therapist in Nigeria specialized in autism and I found Blazing Heart Autism Center. Kemka started his therapy with Blazing Heart and they were doing a good job, managed to slowly bring back his eye contact if you stood up in his face. I continued my research with dear google and then I read about early intensive intervention therapy for children 18-36months with remarkable results of possibly a full recovery from autism. I discussed with my husband and we decided that we should try this option with Kemka. We had to take the decision for me to take a leave of absence from work for a year to enable me spend time with Kemka as he goes through therapy.

Kemka is soooooooooooooooooo much better now, he is 34 months now, he has amazing eye contact, seeks you out to play, he understands simple commands, when we go out to a public place, he turns around to look for his mummy's hands holds on firm and would never let go....And I am reassured my boy isn't going anywhere. He isn't fully there yet, but I know he is fighting his way through. I see my son coming back to the happy playful kid he used to be, I see him filing my world with love, joy and laughter. Its been a rough journey, still so much more to be achieved, still some hurdles to cross, some challenges to overcome, more victories to be won. I still cry quiet a few tears but some of them are now tears of joy.

"I cried as I read this and I am so happy that Kemka has the best mum ever.