What Every Parent Dreads....

The Sunday of 30^th September 2012 was an easy Sunday. Since we woke up late, I ruled out us going to church. I was mostly in the bedroom, perusing one reading material after another in the comfort of the bedroom. Jnr was in the business of shuffling the cartoon channels – for once he monopolized the TV set as Babu was away attending a workshop on Children’s Assembly that weekend. Mercy our househelp also opted not to go to church. Japs was up and about, one minute checking on me in the bedroom, another minute watching TV in the sitting room.

It was sure an easy Sunday morning until the panicky moment set in. At around noon, Mercy burst in to the bedroom asking for Japs’ whereabouts, that she’d looked for him all over the compound including the neighbours’ houses but couldn’t find him. My heart sunk, my bowels twitched and my guts wretched – all those things you feel when in shock and despair?  My worst nightmare had just begun. I didn’t know where to start looking. Our compound is right adjacent to 4 busy roads in the Estate. My first instinct was to ask the bicycle repair men working nearby but no, they hadn’t seen Japs, I thought of going to the 2 churches nearby where the services were on-going or to the neighborhood Public Service Club but my instincts told me to temporarily shelve that, I instead ran towards the park that is between our compound and a Primary School.

I asked the first person I met in the park if she had seen a 4-yr old boy on a navy blue shirt and cream-coloured pairs of shorts and she nodded in affirmative, said that the boy I had described passed him bare-feet 30 minutes ago. 30 Minutes Ago? That scared me, I almost fainted, there is a 2^nd gate to the furthest of the park that opens to other roads including the main Highway and I lost all hopes of finding him still in the park. 30 minutes is equivalent of 20kms stretch for an Attention Deficit Hyperactive Disorder boy, I didn’t for one moment imagine that he would still be in our estate, I was already writing a statement in my head on how to report a missing boy at the police station and other media houses. I thought of calling my parents or his father or my aunts, but rescinded that thought, I knew how they would react, didn’t want to stress them on a sunday.

I prayed to God to keep my son safe. I kept walking in a trance towards the 2^nd gate. Barely 5 minutes of walking, then I saw a bare-feet-happy-go-lucky-boy in a navy blue shirt running towards me and for the 1^st time in my 30 something years I felt a miracle. I hugged my son, carried him home, collapsed and cried myself out.

The thought of Japs someday disappearing continues to be my worst nightmare, I put that in every prayer item that is available. Since he doesn’t talk, I am thinking of devising a way that would make him traceable if ever he leaves home and doesn’t come back one day.

The Speech Therapy with Fun....

Japs and his family met the speech therapist – a young student from United States who had come to Kenya in October 2011 to support children and families with speech impairment. It was a terrific experience working with Jon. Japs and Jon became best of friends and quite easily got along. Jon was easy-going and an extrovert, willingly volunteering his services to improve the lives of children who are having all kinds of speech difficulties, especially children with autism and stutter. Jon’s schedule with Japs was every Tuesday in the afternoon…this routine was consistent until mid-December when Jon took a break to go on a safari at the Masai Maraa. He sure deserved a break.

He came back in January 2012 to wrap his volunteer work and in February, went back to USA…I shall forever be grateful for the tremendous work that Jon did with Japs.  Before he left, he handed over instructional materials on how I would get into the therapy exercise with Japs. (a) Noisy play is great!! (b) Naming of objects with ONE word only. Use object immediately (c) Gesture + word is BEST! (d) Describe things in simple terms as you work/play/wash/put clothes on. (e) Try to encourage Daryle to make sounds or copy your lips (f) PRAISE and be specific, example; GOOD SPEAKING (g) Objects easier than pictures to use with communication (h) The KEY is MOUTHING objects (i) TRY TO USE LITTLE LANGUAGE. Jon also gave out two activity sheets; Objects of Reference and Now-Next. I was instructed to be doing these activities twice a day for 10 minutes, well I must admit that it’s not been easy being consistent but every time I remember Jon and his natural friendship with Japs, I push myself and all in helping Japs to become verbal – I am very confident that we are getting there.

Day One in School

Japs’ day one in school was heartbreaking and even though he could not talk, I sensed that he was disturbed. His puzzlement in this new environment was quite pronounced. As much as he didn’t say it, I could read so many questions on his mind. My heart kept on bleeding at every stage of admitting Japs in this new school. The school hosts both abled and differently abled children. It has programmes for normal school curriculum, special unit and vocational training. After the school management received Japs’ assessment report, he was immediately enrolled in the special unit. This was May 2011 and Japs was only 3 yrs 4 mnths old. From that day, everything changed for mom and Japs. Morning became a very unpleasant time for us – preparation for school started at 5am and by 6am we were by the roadside waiting for the school bus. Every morning became a war time and there were two titans involved; Japs resistance to get into the bus and my reluctance to let him go.

The people who love me and my family said that I was helping Japs…I wasn’t sure about that then, however the story has changed now and soon I will blog about Japs’ life in school. Thoughts of Japs coping in school with strangers stressed me to death, every time he came back home, he would be more clingy and possessive, it was frustrating for both of us. I know he wanted to tell me everything that happened in school and I was only too eager to listen, but this could never happen, because Japs is non-verbal. Instead, I relied more on the teachers to tell me about his life in school.  Today, looking back on the first term in school for Japs, I appreciate the inner strength that I mastered to let go of Japs…school has been the best thing that ever happened to him.

Fighting the Effects of GFCF - What Doesn't Kill You Makes You Stronger!

For most people, the breakdown of dietary protein into smaller and smaller peptides (amino acid chains) and finally into individual amino acids is a process that is smoothly completed as food travels through the digestive system. However, for an individual with autism, it has been found that partially broken-down components of the original proteins are able to pass from the intestine into the bloodstream. This is caused by an intestinal lining defect and/or incomplete digestion – (source: internet). As said earlier on, by removing sources of gluten and casein from the diet of Japs, we were gradually having immense success in at least alleviating the symptoms of autism. I love the bible reference in the book of Hosea 4:6 that states; “My people perish because of lack of knowledge”. My son almost died because we were ignorant about his condition, I thought that his frequent diarrhea that sometimes got him hospitalized was normal and his constant constipation that no medication could relieve him of were just  unfortunate isolated conditions. Japs was suffering, a very unhappy boy 24/7. I was daily pumping his digestive system with lots of wheat, sugar, milk and orange juice. Little did I know that his intestinal lining had a defect that was causing an effect manifested in the symptoms of Autism. As we were on GFCF (Gluten Free Casein Free), we also enrolled Japs for Sensory Integration Therapy.  Sensory integration therapy is essentially a form of Occupational Therapy (OT), and it is generally offered by specially trained occupational therapists. It involves specific sensory activities (swinging, bouncing, brushing, and more) that are intended to help the patient regulate his or her sensory response. The outcome of these activities may be better focus, improved behavior, and even lowered anxiety (source – internet).With our employment medical scheme we were out to give Japs the best in therapy, unfortunately none of the medical service providers in our town  - Kisumu had an Occupational Therapy unit. The next option was to seek for these services at the Government hospital. This took us to the Provincial General Hospital and we were amazed at how well equipped and competently staffed this unit was - there was hope.  We started the routine process of Occupational Therapy, this is where we met Boaz, the in/charge of the OT Unit at the Governmental Hospital..…

Coping with Autism - The Conventional Way?

It was one thing to learn that my son has a condition – Attention Deficit Hyper-activity Disorder (ADHD), it was another thing to discover that ADHD is inextricably linked to AUTISM.  A torrent or crazy wild thoughts ran through my mind the first time in February 2011, when I heard Japs had autism. I thought then that Japs would not attend mainstream school, nor get formal education because of his condition, a search therefore was to get an integrated school that offers quality learning, care and support to children with special needs. We visited an Education Assessment Centre prior to seeking admission at a school in Kisumu Town, Kenya that integrates children with special needs. My experience at the Assessment Centre was one that I will never forget, blatantly being told that my child has a mental disability shook me to the core, casually being told that my child may never talk crushed me, fear that Japs might never report anyone who abuses him because he doesn’t speak was unbearable, the reality that my son may never fall in love, marry, have children, be independent, etc was unfathomable – those were my thoughts at the moment – when I was still thinking, feeling, reacting inside the box – I underwent mixed reactions/feelings during the transitional moment – going through the status of denial to acceptance. It was not easy to come out of the grief, stayed in that status for almost a month, but then I realized that my son is still the same adoring little boy that I was in love with before I was hit by the word AUTISM. I decided to throw away the box, embraced my son with his condition wholly and embarked on a mission to help him cope. This is where the diet and occupational therapy came in. While no medical practitioner recommended special diets, I had heard of the success of such diets through counseling at the Assessment Centre, reading materials from Autism Society of Kenya, browsing the websites, and getting opinions and advice from friends and relatives. The science around such diets is sketchy, but there are plenty of anecdotal stories of special diets having a profound and positive impact on children with autism. The gluten (wheat) free, casein (dairy) free diet is the most popular of the specialized diets, and there is evidence that the diet is often helpful in lessening autistic symptoms such as impulsive behaviors, lack of focus, and even speech problems. But wheat and dairy are a part of almost everything we serve in our homes -- and keeping a child away from ice cream, bread, cake, milk, and most snack foods and cereals is no small task. Before I started on the Gluten Free Casein Free diet (GFCF) I had two options, to “dive in head first” or the slower, “get your feet wet” approach. Being the coward that I was, I couldn’t just get rid of gluten and casein from the family diet instantly, I am trying the GFCF diet on Japs but its damn hard, once in a while I get into the temptation of sins, I know am not helping Japs but hell…..I am weak and in love. However the little effort that I am making on GFCF is a tremendous help to me and a great improvement on Japs condition……

Was I Mother Enough?!!

Political instability most often than not negatively affects lives in all facets of political, social and economic nature. My home town, Kisumu – Western part of Kenya in East Africa was the worst hit during the 2007/2008 Post Election Violence (PEV), but in a twist of fate, it brought good tidings in my life. Members of a particular community who had been doing business were forced to flee, this caused a vacuum and at the same time opportunities in the economic sector. 2008 is therefore the year that I started up BAJUJA Investments (www.facebook.com/BajujaInvestments), an organization that uses innovation and technology to provide essential goods and services. Business was good and money was trickling in. This meant spending the usual eight hours in regular employment, more hours divided between sleep/rest and business and less work with the family. I must say that my passion in business alongside my formal employment left me no time to be a ‘mother’. Japs was 8 weeks old then. When I look back at those years, I must say that I abandoned my responsibilities…I feel so guilty that as much as I was mostly in the lives of Japs elder brothers (Kyle and Tyler), I can’t say in equal measures that Japs got the same "motherly" treatment…perhaps if I could have been around more, I could have timely detected that Japs had a condition….perhaps. We patiently waited for Japs to say his 1^st words. At the age of  three, he still hadn't developed expressive language...his speech development was delayed. Our conclusion was that babies undergo different developmental milestones and Japs’ was one of those unique ones. My friends detected that something was amiss, but none could face me and tell me so, some of them subtly suggesting that I take Japs for a speech therapy/assessment. During one of Japs trips to the hospital, his pediatrician diagnosed Attention Deficit Hyperactivity Disorder (ADHD) and prescribed drugs, but our skepticisms and fears about side effects forced us to resort to dietary measures and therapies in controlling Japs condition. The two completely transformed Japs….from an irritable*grumpy*tantrum-throwing*sickly*ever-constipated*moody boy to the jovial*normal*focused*lovable*expressive*happy*healthy*composed*fun*engaging boy that he is today!!

Many questions....few? No....nil answers (coming to terms with autism)

On the 22^nd day of July 2007 at 3.15pm, I woke up from the grogginess of anesthesia, my Aunt Nuru who has been with me through-out labour up to the time she signed the consent for a caesarean operation, happily announced “it’s a baby boy!!” Japs faced his first shocker on his 8th day on earth…with gunshots, anxiety, tension and violence emanating from a highly contested general election in Kenya….could that have contributed to his condition? We shall never tell….After 90 days in a maternity leave, I reluctantly made arrangements to leave the baby with a house-help and resume duties at my place of work….could that have contributed to his condition? We shall never tell….One morning when preparing his baby cot, I unconsciously placed my 3-month old bundle on top of a double deck bed, he fell down with a thud, I was momentarily paralysed in shock…hey there don’t start cursing me…how could I have known that a 3-month old baby would in a flash move to the edge of a bed and suddenly fall?? When I recovered, I gently lifted my poor baby from the floor, soothed his agonising cry and rushed him to the hospital, a CT scan and x-rays were done to determine the extent of brain damage, fortunately all was well…I heaved a sigh of relief, did a quick prayer to the Almighty and thought…may be it was the carpet that cushioned the fall, or was it God’s hands?...could this have contributed to his condition? We shall never know…From the time Japs was diagnosed with autism…countless questions with no answers have crossed my mind. Grief describes an individual’s thoughts and feelings associated with the loss of someone or something significant to them. Grieving is a personal experience and therefore one’s grief experience cannot be compared to someone else’s”. I have gone through a myriad of grief coming to terms with Japs Autism; from anticipatory grief, to delayed grief; to blocked grief; to aborted grief; to complicated grief reactions….